Dana and I got up to Stanford at 10:20 this morning, three hours door to door, early for my 10:30 appt. We chewed Tums the whole way up; it seems we had some anxiety about the results from last week's PET scan. I woke up this morning trying to accept that even if I still had some leukemia I'd be alright, and a minute later wondering what was the most important thing to do in my final six months, and a minute later shoving all that out of my mind.
First task in the Cancer Center was the standard blood draw for lab tests, and then the main doc came in to begin the bone marrow biopsy (bmb). First, he and the PA asked if I'd had a PET scan recently! My head almost exploded, and I said 'Yeah, last Monday, out in the modular building.' They couldn't find it, so the PA went off to locate the missing scan. I was envisioning another PET scan, another week of waiting, of anxiety.
The doc and the tech started in on the bmb, and the PA came back as we waited for the lidocaine to settle in and numb my iliac crest. The PA said 'We found the PET scan, the test was complete.' I was thinking 'Of course it was complete, I laid in the tube for 45 minutes, didn't move a muscle.' The doc said to me congratulations, you can cry now, that means they did not find any indication of leukemic cells. You are cancer free.' I was so overwhelmed I didn't cry. I was having a hard time processing the info.
I had just skated through a bone marrow transplant with no graft v. host, little negative reaction to radiation and chemo, and now I was clear and clean. There is a small chance that there are leukemic cells in the bmb slices, but by the way the doc and the PA reacted, this chance was barely considerable. I will know that later this week, but they were confident enough that they planned to remove my port.
What does it mean? I can eat in restaurants. No more mask except in the hospital. I can eat fresh vegetables and fruit (at home only). Half of my meds were cut out, and the rest were reduced, meaning fewer headaches and stomachaches. No more excuses for laying around and not exercising. Fortunately, I still can't vacuum or garden because of spores. I can start golfing again in a few weeks (except I am so weak). I need to figure out what my next gig is, who I am now.
The doc performed the most painless bmb I have had, barely a needle prick or two, and we were done in 15 minutes. My labs came back and showed my creatinine level had almost doubled, not good, but nobody got very nervous. They hung a bag of saline on me to flush out some creatinine, and then the PA removed my central venous catheter (port). He had to clip away some tissue to make room to remove the cuff on the port, so I have a bandage and can't use a spa or hot tub or bath for 3 days.
I feel like I am done. Sure, I have to go back once a week for a few weeks, then every two weeks for a while, then once a month for a while. Fine, so be it. We agreed that we could monitor some things through my local oncology group. Next year I will be one of the new guys at the 21st BMT Reunion.
I whupped the big C, and I couldn't have done it without all of the thoughts, prayers and positive messages from all of you. I have a sister that provided me with the premium bone marrow. I was taken care of by a great caregiver and a few great substitutes that did not let me falter, enticed me to eat and exercise, and kept me engaged and positive. I may have had doubts in the darkest of hours, but the collective consciousness never had any other outcome but sucess in mind.
The last piece of business will be what to rename the blog; is it 'Holy Cow I Had Leukemia' or 'Holy Cow I Beat Leukemia'?
Monday, December 29, 2008
Sunday, December 28, 2008
Goodwill
Every year at this time I realize I have too much stuff. It is so hard to get rid of items that have emotional meaning, simple things like softball t-shirts, or things that are nice and in good shape but that are just clogging my life and I'll never use again. So I have begun the process of emptying drawers and closets and garages of perfectly good stuff, and making my annual Goodwill donation. We have had many yard sales, and I know these clothes wouldn't be good items. It will be a little strange to see the transients downtown wearing my softball shirts.
It turns out I need organization, a lack of clutter, more than I need these old sentimental items. When we came home from Palo Alto with the final load of stuff on Monday, I was instantly stressed by how many of my things and processes had been tossed aside and overcome. We compounded this by taking a bunch of stuff to Palo Alto and now we had to reassimilate this stuff back into SLO.
It was as though I lived in a rain forest, and my kids were the Amazonian biota, overgrowing all trace of me in 3 months. Naturally I brought out the machete and started hacking my way clear, but I think my faulty clutch and stress level made for a less Merry Christmas than we might have had. I could have been more jolly.
To add to that, Dana has busted me on my propensity to fall back on cancer as an excuse to do nothing. I wrap in a blanket and read, or watch a movie, and I have no motivation. I am afraid I am waiting for the clearance from the doctors tomorrow, after last week's PET scan results and tomorrow's bone marrow biopsy, before I push myself to any great effort.
It is day 89, and the fact is even if there is some leukemia left in me, the fight isn't over. They will turn down the immunosuppressant and let the bone marrow loose to hunt down any remaining bastards, with the risk of triggering some graft vs. host response. So I have to get off my ass, clear out the clutter, hack my way through the jungle without any collateral damage and start a new routine. Tomorrow. Today is Sunday, a day of rest and NFL. Actually, I will finish clearing up the garage while I watch a game, because the garage is where the treadmill and gym are. Go Patriots! Go Jets!
It turns out I need organization, a lack of clutter, more than I need these old sentimental items. When we came home from Palo Alto with the final load of stuff on Monday, I was instantly stressed by how many of my things and processes had been tossed aside and overcome. We compounded this by taking a bunch of stuff to Palo Alto and now we had to reassimilate this stuff back into SLO.
It was as though I lived in a rain forest, and my kids were the Amazonian biota, overgrowing all trace of me in 3 months. Naturally I brought out the machete and started hacking my way clear, but I think my faulty clutch and stress level made for a less Merry Christmas than we might have had. I could have been more jolly.
To add to that, Dana has busted me on my propensity to fall back on cancer as an excuse to do nothing. I wrap in a blanket and read, or watch a movie, and I have no motivation. I am afraid I am waiting for the clearance from the doctors tomorrow, after last week's PET scan results and tomorrow's bone marrow biopsy, before I push myself to any great effort.
It is day 89, and the fact is even if there is some leukemia left in me, the fight isn't over. They will turn down the immunosuppressant and let the bone marrow loose to hunt down any remaining bastards, with the risk of triggering some graft vs. host response. So I have to get off my ass, clear out the clutter, hack my way through the jungle without any collateral damage and start a new routine. Tomorrow. Today is Sunday, a day of rest and NFL. Actually, I will finish clearing up the garage while I watch a game, because the garage is where the treadmill and gym are. Go Patriots! Go Jets!
Wednesday, December 24, 2008
Tuesday, December 23, 2008
Home Sweet Home
Here we are in SLO, got in last Friday, went back to Stanford Cancer Center yesterday for a 9 am regular checkup and a 5 pm PET scan. We didn't arrive until 11:30, no big deal, and got started on the PET scan an hour early, but a long day nevertheless. We went back to the apartment and got the last of our stuff, and got to SLO at 10pm. Mike and Jack and I were going to stay over last Friday, when Dana called and pointed out that we could come to SLO and just drive back Monday, and she could stay in SLO, so that is what we did.
It turns out I am a little beside myself, not ahead, not behind. I have to go to the local hospital tomorrow and get 2 units of blood, so six hours of sitting and reading. I have been freezing all the time lately, so I think that is from being anemic. All the rest of my chemistry looks fine, so whoever donated the blood, thanks. I think people must get ahead of their souls a lot, and we end up with bad crimes and government. What would happen if you got behind your soul, would it be just as bad?
It was Kilgore Trout that wrote sci-fi stories that were only published in porno mags, and it was Dwayne Hoover, his only fan, that went nuts in "Breakfast of Champions." Happy Holidays and get the shopping done!
It turns out I am a little beside myself, not ahead, not behind. I have to go to the local hospital tomorrow and get 2 units of blood, so six hours of sitting and reading. I have been freezing all the time lately, so I think that is from being anemic. All the rest of my chemistry looks fine, so whoever donated the blood, thanks. I think people must get ahead of their souls a lot, and we end up with bad crimes and government. What would happen if you got behind your soul, would it be just as bad?
It was Kilgore Trout that wrote sci-fi stories that were only published in porno mags, and it was Dwayne Hoover, his only fan, that went nuts in "Breakfast of Champions." Happy Holidays and get the shopping done!
Friday, December 12, 2008
Before and after
The prompt this week for the Writing Through Cancer workshop http://www.writingthroughcancer.com/ is 'How has cancer changed you?' These prompts are just that, something to get you writing, and this is some of what I came up with:
Water erodes me, chiseling out pathways
to answer gravity.
Lichens take hold in any nook,
Pry their way into me,
Tiny footholds where the water
Freezes, expands, freezes, expands.
What was granite is now broken.
Trees take root in these spreading cracks,
Further weakening me.
With the relentless power of water
Larger pieces of me shear away,
And I have to accept
My future as dust.
And this:
to answer gravity.
Lichens take hold in any nook,
Pry their way into me,
Tiny footholds where the water
Freezes, expands, freezes, expands.
What was granite is now broken.
Trees take root in these spreading cracks,
Further weakening me.
With the relentless power of water
Larger pieces of me shear away,
And I have to accept
My future as dust.
And this:
On August 28, 1972, sometime in the early afternoon, I thought about death for a couple of seconds. I was flying through the air, on fire, covered in gasoline, having either leapt or been blown out of the boat we had been fueling. Once I hit the water my mind turned entirely to survival; the air pocket I created on entering the water meant I was still on fire and time was crawling. Naturally, I started twisting around like a drill to get rid of the air pocket. Having watched plenty of war movies, I was sure the surface of the water was on fire, so I swam like crazy until I came to a spot shallow enough. I launched out of the water, so the surface fire would burn my stomach and not my eyes. The water was not on fire. It wasn’t until later, when I was rewinding the tape in my head, that I realized I gave death a thought while airborne. More a question - am I about to die?
With second-degree burns, the nerve endings remain intact and on the surface and the skin has been burned around it. Infection is the biggest danger with burns; so the treatment is to scrub with Betadine, then apply Sulfamylon crème. This is mostly sulfur, which burns any infection, and has the side effect of making you think you are already burning in hell. The Demerol they prep you with just keeps you conscious. Since you are already in hell, any thoughts about death are seared from your mind. After 45 minutes the burning effect wears off, the Demerol takes over, and you’re loopy.
I don’t remember thinking about my imminent death again until February 7, 2005, when the doctor said ‘You have leukemia.’ And now I don’t remember not thinking about death a little bit each day since then. I lie in bed every morning, flopping back and forth, wrestling my thoughts about death and dying. I am not obsessed, but I like to reach over and smack the death thought around a little bit, try on different scenarios. Some days I think about all the stuff I will miss or haven’t done, but then I tell myself I am not dying yet. When I get up I have some tea and don’t think much about death, unless I am asking the docs about my odds.
And for fun, what we are faced with in the morning:
With second-degree burns, the nerve endings remain intact and on the surface and the skin has been burned around it. Infection is the biggest danger with burns; so the treatment is to scrub with Betadine, then apply Sulfamylon crème. This is mostly sulfur, which burns any infection, and has the side effect of making you think you are already burning in hell. The Demerol they prep you with just keeps you conscious. Since you are already in hell, any thoughts about death are seared from your mind. After 45 minutes the burning effect wears off, the Demerol takes over, and you’re loopy.
I don’t remember thinking about my imminent death again until February 7, 2005, when the doctor said ‘You have leukemia.’ And now I don’t remember not thinking about death a little bit each day since then. I lie in bed every morning, flopping back and forth, wrestling my thoughts about death and dying. I am not obsessed, but I like to reach over and smack the death thought around a little bit, try on different scenarios. Some days I think about all the stuff I will miss or haven’t done, but then I tell myself I am not dying yet. When I get up I have some tea and don’t think much about death, unless I am asking the docs about my odds.
And for fun, what we are faced with in the morning:
Monday, December 08, 2008
Dwayne Hoover?
It is sad to notice my memory for certain things just return blank. It's like the irradiation of the last 2 years fried away some sections. I was trying to remember which Vonnegut book has the main character writing science fiction shorts that he can only get placed in porn mags. Was that Breakfast of Champions? Anyway, with this photo, that is how I feel.
Day 69 today. It is pretty dang cold up here in Palo Alto, in the 50s. I was in the Cancer Center for my morning appointment, and the doc and I agreed that I could come in 12/22 and then next on 12/29 (Day 90). So that means we can leave the apartment on 12/22 and move back to SLO! The only monkey wrench dangling is if the tests on 12/29 don't go well and they find some leukemia, which isn't going to happen. If that did happen, they turn down the immunosuppressant (Prograf) and let the bone marrow hunt down and kill the leukemia, and hope for no side effects to the kidneys, lungs, or liver. They will want me close at hand while they do that.
My weight is steady, my blood counts are steady. My brother Frank took great care of me for a week, had me hiking around a little more, pushed me up to the Stanford Dish. We ate well, lots of brussels sprouts and asparagus, pasta, salmon, and he made a 20000 calorie pecan pie to go with the pecan ice cream. He left Saturday and Dana returned from her reverie.
Mike and George B came by on Saturday for a visit, landing between Frank going and Dana coming. George was taking the arborist exam in SF, so they swung by for a while.
There is an editor, and he is me. If I get enough flak I'll change something, unless I don't. I get to highlight things, hide things, repeat things. I want to make note of the comment Earl about his Uncle Tommy left on the 'Big Eats' post, because it was so poignant and because he doesn't write often. I like to stay positive in writing this blog, but as we approach day 90 with it's scary tests that predict my fate, I have more early morning moments of 'what if?' I have rekindled my hopes by asking the docs what if, and not shying from the possibilities. I love to hear that we have more options.
Day 69 today. It is pretty dang cold up here in Palo Alto, in the 50s. I was in the Cancer Center for my morning appointment, and the doc and I agreed that I could come in 12/22 and then next on 12/29 (Day 90). So that means we can leave the apartment on 12/22 and move back to SLO! The only monkey wrench dangling is if the tests on 12/29 don't go well and they find some leukemia, which isn't going to happen. If that did happen, they turn down the immunosuppressant (Prograf) and let the bone marrow hunt down and kill the leukemia, and hope for no side effects to the kidneys, lungs, or liver. They will want me close at hand while they do that.
My weight is steady, my blood counts are steady. My brother Frank took great care of me for a week, had me hiking around a little more, pushed me up to the Stanford Dish. We ate well, lots of brussels sprouts and asparagus, pasta, salmon, and he made a 20000 calorie pecan pie to go with the pecan ice cream. He left Saturday and Dana returned from her reverie.
Mike and George B came by on Saturday for a visit, landing between Frank going and Dana coming. George was taking the arborist exam in SF, so they swung by for a while.
There is an editor, and he is me. If I get enough flak I'll change something, unless I don't. I get to highlight things, hide things, repeat things. I want to make note of the comment Earl about his Uncle Tommy left on the 'Big Eats' post, because it was so poignant and because he doesn't write often. I like to stay positive in writing this blog, but as we approach day 90 with it's scary tests that predict my fate, I have more early morning moments of 'what if?' I have rekindled my hopes by asking the docs what if, and not shying from the possibilities. I love to hear that we have more options.
Monday, December 01, 2008
Thanksgiving
Las Enfermeras Guapas check my blood pressure.Sometimes you make a fairly innocent statement that results in great works. Many months ago I labeled a picture of Dana and her friends, all of whom speak Spanish, Las Guapas or the Beauties. Since that time I have heard rumors of a 'special treat' they were going to give me. Friday night, I got it, when the bravest of Las Guapas became Las Infermeras Guapas, the Beautiful Nurses. I sat in a chair while the 'nurses' danced around me for four minutes. It was nearly overwhelming. This photo is after the dance. I haven't decided whether to release the video.
So much to be thankful for. I got to go home for the holiday and see my family. I got to sleep in my bed. Those are easy. I am also thankful for all the love and support I get from all my friends, family, and acquaintances while I slug my way through this disease. I am certainly thankful that I respond well to chemo and all the rest, and that my sister Lisa was a perfect bone marrow match. I am ever thankful that Dana married me and hasn't ditched me, and that we have two beautiful kids.
My brother and I are up at Palo Alto today, and the docs told me today I need some blood for the red cells. I thought I was a little anemic, and I am. So tomorrow I go in again at 7am and get two units of blood, five hours, bring snacks and drinks. Frank will be my caregiver until Saturday, giving Dana a break. I stopped losing weight and the rest of my numbers look good, so all in all we're rocking onward.
So much to be thankful for. I got to go home for the holiday and see my family. I got to sleep in my bed. Those are easy. I am also thankful for all the love and support I get from all my friends, family, and acquaintances while I slug my way through this disease. I am certainly thankful that I respond well to chemo and all the rest, and that my sister Lisa was a perfect bone marrow match. I am ever thankful that Dana married me and hasn't ditched me, and that we have two beautiful kids.
My brother and I are up at Palo Alto today, and the docs told me today I need some blood for the red cells. I thought I was a little anemic, and I am. So tomorrow I go in again at 7am and get two units of blood, five hours, bring snacks and drinks. Frank will be my caregiver until Saturday, giving Dana a break. I stopped losing weight and the rest of my numbers look good, so all in all we're rocking onward.
Monday, November 24, 2008
Big eats
Dana painting on the patio.It is day 55, and I have not been in the Cancer Center since Friday, and don't have an appointment until 7am Wednesday. On Friday my weight had dropped to 165, and the docs are getting nervous about that, so they are urging me to eat more and more often. I am trying, but with little appetite. The incentive is if I lose any more weight they will want to scope me, take a peek at the whole tract, make sure everything is ok. So, I eat every three hours.
One of the women in our writing group just passed away. She had suffered long and hard with a rare form of appendiceal cancer, and I hope the rest of her journey is filled with glory.
When people are dying that you have known it brings death closer to your mind. I find myself lying in bed wondering if the pain in my back is my kidney or liver rebelling, and even though I can logic past it, the mere fact of the death of a fellow cancer warrior raises an awareness that takes time to scar over, a reminder that cancer can be fatal Just not for me. Not this time.
One of the women in our writing group just passed away. She had suffered long and hard with a rare form of appendiceal cancer, and I hope the rest of her journey is filled with glory.
When people are dying that you have known it brings death closer to your mind. I find myself lying in bed wondering if the pain in my back is my kidney or liver rebelling, and even though I can logic past it, the mere fact of the death of a fellow cancer warrior raises an awareness that takes time to scar over, a reminder that cancer can be fatal Just not for me. Not this time.
Thursday, November 20, 2008
What is missed
Mike and Patience check the waves.It's been quite a while since I've been home, and I am really missing certain things. I miss Mike and John and Woody - in my mind they (Mike and John) are these gangly ten-year olds with mop tops, and every time I hug them I am surprised at how big and hairy they are. I miss my bedroom, which is very comfortable, a den of peace and tranquility. I miss video on demand. I miss that high-speed internet connection. I am crawling along on a 54mb wifi with a weak connection. I miss golfing, going out to the course and just putting around for an hour. I miss the Saturday am surf check with Mike, even though I have been too wanky to go out lately. Only under perfect conditions.
I feel bad to have tied Dana down to sitting around this apartment with me. While she is getting out a bit, she is a very social animal with lots of friends. I miss her ability to get away from me. Likewise, I miss the ability to have a disagreement and walk away, go for a walk, get away from each other for a while.
Healthwise I am chugging along, constant headaches from Prograf, a backache the last few days, and low energy. I really have to push myself to do any exercises or go for a walk. I miss having a lot of energy and some muscles. I did one pushup yesterday! The good news about all this is it will all be over soon. I can have it all back. It will take a lot of work for some of it, but if I want it I have a chance.
The Blood and Bone Marrow Drive was a success, with over 50 swabs for the bone marrow registry. Cyle really pushed to get this done, and had help from Ben, Terri, Rosie and (I assume) other TEC employees. An open thank you from me to these guys for their effort and support.
Tuesday, November 18, 2008
Day 49, halfway
Or more than halfway, I hope. I also hope the blood and bone marrow drive had a good turnout. Speaking of hope, that last thing I wrote on hope did not inspire me, so I tried again and came up with this:
Hope is the life force that urges us on in moments of doubt and misery. When I was faced with multiple lumbar punctures and bone marrow biopsies, hope whispered in my ear, ‘This too shall pass, focus on a peaceful place.’ When I was slammed with chemotherapy and feeling like death was at the door, hope told me ‘You are fine, you’ll get through it, you have lots to live for.’ When I was in the irradiation booth, holding myself up while they blasted my entire body, hope told me ‘Only a few more minutes, you are strong, you’ll make it.’ During the days after radiation and chemo, nearly bedridden in the hospital, hope would count down the days for me, and remind me how lucky I was compared to what could be, and to keep fighting. Now hope tells me, ’You’re almost done, you will be cured, one day at a time.’ Hope has kept me warm in this chillest land, throughout the storm on this strange sea.
I like that much better, it speaks to what I know.
My son Mike came up to visit Saturday. Ellen Sheffer was coming to the area and offered him a ride, so we hung out, played some scrabble, watched a movie, and he played some ukulele for me. I had started a new drug Bactrim that morning, and wouldn't you know just as we sit to eat I get this urpy feeling. I stood and gravitated to the bathroom, telling Mike 'I started this new drug this morning, and the side effect is nausea.' He is eating his soup, but then it really hits and I go the bathroom and get nauseous. When I came out he was standing at the far end of the kitchen, as far as he could get in this little apartment. Sorry Mike.
Turns out Bactrim and I don't get along; I had the same problem Sunday and Monday, so they changed my prescription to another drug.
Cecelia and Jan Spano also came up on Saturday, and they took Dana out and about on Saturday while Mike nursed me. After Mike left with Ellen, the girls taught me how to play euchre. Good game.
Here is the really big news. Since my counts are steady and my health is good, the docs have agreed I can go to SLO from Wed. to Sun. of Thanksgiving week, won't that be nice! SO let's keep our fingers crossed that nothing changes that! Yippe ai o tay ay!
Hope is the life force that urges us on in moments of doubt and misery. When I was faced with multiple lumbar punctures and bone marrow biopsies, hope whispered in my ear, ‘This too shall pass, focus on a peaceful place.’ When I was slammed with chemotherapy and feeling like death was at the door, hope told me ‘You are fine, you’ll get through it, you have lots to live for.’ When I was in the irradiation booth, holding myself up while they blasted my entire body, hope told me ‘Only a few more minutes, you are strong, you’ll make it.’ During the days after radiation and chemo, nearly bedridden in the hospital, hope would count down the days for me, and remind me how lucky I was compared to what could be, and to keep fighting. Now hope tells me, ’You’re almost done, you will be cured, one day at a time.’ Hope has kept me warm in this chillest land, throughout the storm on this strange sea.
I like that much better, it speaks to what I know.
My son Mike came up to visit Saturday. Ellen Sheffer was coming to the area and offered him a ride, so we hung out, played some scrabble, watched a movie, and he played some ukulele for me. I had started a new drug Bactrim that morning, and wouldn't you know just as we sit to eat I get this urpy feeling. I stood and gravitated to the bathroom, telling Mike 'I started this new drug this morning, and the side effect is nausea.' He is eating his soup, but then it really hits and I go the bathroom and get nauseous. When I came out he was standing at the far end of the kitchen, as far as he could get in this little apartment. Sorry Mike.
Turns out Bactrim and I don't get along; I had the same problem Sunday and Monday, so they changed my prescription to another drug.
Cecelia and Jan Spano also came up on Saturday, and they took Dana out and about on Saturday while Mike nursed me. After Mike left with Ellen, the girls taught me how to play euchre. Good game.
Here is the really big news. Since my counts are steady and my health is good, the docs have agreed I can go to SLO from Wed. to Sun. of Thanksgiving week, won't that be nice! SO let's keep our fingers crossed that nothing changes that! Yippe ai o tay ay!
Wednesday, November 12, 2008
Hope is the thing
Hope by Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
_________________
I hope we don’t destroy the planet before my great-grandchildren get a chance to fix it.
I hope Obama can get us straightened out.
I hope my dog is getting walked.
I hope this mucositis goes away soon.
What is hope? Pondering this, I’ve come to some conclusions. Hope is more than optimism; it includes a reasonable expectation for a good outcome. Hope is what we have when we can only influence an outcome in a limited way, or not at all. Hope can and will change form given new information. If circumstances grow more dire, we hope for more specific outcomes – maybe we were hoping to be out of the hospital in a week, but now a setback has us just hoping that the new chemo is effective against our cancer. If all else fails, we hope for a miracle, probably a false hope.
Leading up to the recent presidential election, many of us hoped that Obama would win. Now that he has won, we expand our hope to include everything wrong in the USA, and then everything wrong in the world. He seems like a global figure, and I have always hoped that someday we would recognize that earth is the gift from God to us, and this is what we should worship, and we need someone to lead us to this conclusion. Hope springs eternal. “Yet, never in extremity, it asked a crumb of me.”
I feel very hopeful in a much broader sense than I did a month ago, hopeful for myself and for everyone else.
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
_________________
I hope we don’t destroy the planet before my great-grandchildren get a chance to fix it.
I hope Obama can get us straightened out.
I hope my dog is getting walked.
I hope this mucositis goes away soon.
What is hope? Pondering this, I’ve come to some conclusions. Hope is more than optimism; it includes a reasonable expectation for a good outcome. Hope is what we have when we can only influence an outcome in a limited way, or not at all. Hope can and will change form given new information. If circumstances grow more dire, we hope for more specific outcomes – maybe we were hoping to be out of the hospital in a week, but now a setback has us just hoping that the new chemo is effective against our cancer. If all else fails, we hope for a miracle, probably a false hope.
Leading up to the recent presidential election, many of us hoped that Obama would win. Now that he has won, we expand our hope to include everything wrong in the USA, and then everything wrong in the world. He seems like a global figure, and I have always hoped that someday we would recognize that earth is the gift from God to us, and this is what we should worship, and we need someone to lead us to this conclusion. Hope springs eternal. “Yet, never in extremity, it asked a crumb of me.”
I feel very hopeful in a much broader sense than I did a month ago, hopeful for myself and for everyone else.
Monday, November 10, 2008
Just the facts, ma'am
Day 41 and chugging along. The dang mucositis persists, this filmy thing in my mouth like I drank too much milk. And the sore spots on my tongue aren't healing. I even had the dry heaves the other day, right out of the blue. I was just trying to spit out this bubbly mass from my mouth. Dana implored me to 'Make it to the toilet! The sink can't handle chunks!' Caregiver AND cheerleader! It was all air, so it didn't matter. I suppose this could be gvhd and I may have to live with it for a while.My WBCs were at 7.4 on Saturday, and absolute neutrophil at 5.49, so the marrow is rocking. I just have to avoid any infections for another 59 days and not trigger gvhd (unless I already have). I could still use a few more red cells, a little anemic, but I think the drugs are hammering my metabolism more than anything else. I am always cold. Chills run through me non-stop; there is one running up and down my spine right now. I sit on the couch with a big faux fur cover on, and a soft hat, and I am alright.
This really all starts with Prograf or FK506, which is the immunosuppressant they give me to manage acceptance of the new marrow versus infection versus gvhd. It has many bad side effects - it damages the kidneys, causes headaches, raises your blood pressure, makes you prone to infections, burns up magnesium and potassium, causes acid reflux (as if I needed help there) and generally kicks your ass.
Here are the drugs I am on now:
Prograf, 6mg / day now
Actigall, to prevent kidney damage
Acyclovir to prevent infection
Norvasc to lower blood pressure
Diflucan to fight fungal infections
Potassium
Magnesium
Nexium for acid reflux
It's no wonder I don't feel great. But hey, it's day 41 and we're chugging along.
Dana and I went to writing class last Wed., and I suffered through three hours with the hepa mask on. This time there was another male in class, and 12 women. One assignment the teacher handed out sea shells, nice ones, and told us to write something. Every woman wrote about the shells in some way. The other guy wrote about a fishing adventure with his Dad and uncle, and I wrote about giant waves that creamed us at Point Judith. Huh.
We also had this exercise of doing alpha poems, where the first letter of each line spells something, like this:
Dana and I went to writing class last Wed., and I suffered through three hours with the hepa mask on. This time there was another male in class, and 12 women. One assignment the teacher handed out sea shells, nice ones, and told us to write something. Every woman wrote about the shells in some way. The other guy wrote about a fishing adventure with his Dad and uncle, and I wrote about giant waves that creamed us at Point Judith. Huh.
We also had this exercise of doing alpha poems, where the first letter of each line spells something, like this:
Must be an easier way,
Using my body, making this a
Cause celebre, like some
Oversexed hotel heir with bulimia.
Still I regret ever hearing of cancer.
In no way do I deserve this, this
Treatment of my body;
I am not a
Septic system.
Which of course spells mucositis.
Feeling some pain, I push the button.
Feeling some pain, I push the button.
Every push brings some relief, a
Narcotic surge
Takes hold of me, just for
A little while,
Not for long,
Yet
Lucidity escapes me for days.
So you crazy blog readers, you can do better than that, let's see what you can do with this alpha poemery.
Yesterday we went to see the Papua New Guinea Sculpture Garden, right here on the Stanford campus. In '94 ten sculptors from New Guinea came to visit for six months, and created this garden. Dana stumbled upon it on a long walk. Unfortunately her camera battery was dead, but I found these pics. There is actually a rock sculpture of the Gates of Hell - I'll get a pic of that when we go back.
So you crazy blog readers, you can do better than that, let's see what you can do with this alpha poemery.
Yesterday we went to see the Papua New Guinea Sculpture Garden, right here on the Stanford campus. In '94 ten sculptors from New Guinea came to visit for six months, and created this garden. Dana stumbled upon it on a long walk. Unfortunately her camera battery was dead, but I found these pics. There is actually a rock sculpture of the Gates of Hell - I'll get a pic of that when we go back.
Tuesday, November 04, 2008
Historic Day
Today we select a new President, handing that person an enormous job, an enormous mess. I admit that I thought our country thrived under Clinton, when everyone had jobs and spending money, and the redistribution of wealth he created drove us to a surplus. There was a small blurb buried on page 5 in the paper the other day that the major economies of the world had constricted wealth in a smaller population, and showed we were now just ahead of Mexico and Turkey in terms of wealth distribution. 38% of US wealth held by 1% of the people. It always seemed to me that a volunteer military does better if there is a bigger pool of uneducated people with little opportunity and no money.
What is really bothering me is that Erica, a fellow journeyer through the ALL nightmare, has relapsed after her BMT failed. She has been through all the hells I have and a few more, and no she is out of options. It seems very unfair that a young, healthy woman with a great attitude and fighting spirit and massive support group should be treated this way. Someone tell me, what sort of God is this? Why her? And then I remember a post I wrote way back in March '05 where I asked that question. Why me? And the only answer is, why not me. There is a huge luck factor in getting through this.
My luck continues. My WBCs yesterday were at 5.5, normal range is 4-11. I am still low on reds and platelets, but all are rising. My kidney is under assault by Prograf (FK506), so we lowered that dose and I am drinking 3 liters/day. The mouth is still cut up a little bit so I watch what I eat.
Dana is back, over her cold, and taking good care of me. She made us walk to City Hall yesterday to vote, and it was raining, waaaaahhh. She is making pancakes and bacon right now, yummy, I will have to be careful with the bacon. I need to commit an hour a day to exercise. Right now I look like an elementary school kid drew a picture of me, a big circle and some lines. I would like to surf and golf again, even badly. Red blood cells would help and we're almost there.
My thoughts and prayers are with Erica this week, and with the poor guy that wins the election.
What is really bothering me is that Erica, a fellow journeyer through the ALL nightmare, has relapsed after her BMT failed. She has been through all the hells I have and a few more, and no she is out of options. It seems very unfair that a young, healthy woman with a great attitude and fighting spirit and massive support group should be treated this way. Someone tell me, what sort of God is this? Why her? And then I remember a post I wrote way back in March '05 where I asked that question. Why me? And the only answer is, why not me. There is a huge luck factor in getting through this.
My luck continues. My WBCs yesterday were at 5.5, normal range is 4-11. I am still low on reds and platelets, but all are rising. My kidney is under assault by Prograf (FK506), so we lowered that dose and I am drinking 3 liters/day. The mouth is still cut up a little bit so I watch what I eat.
Dana is back, over her cold, and taking good care of me. She made us walk to City Hall yesterday to vote, and it was raining, waaaaahhh. She is making pancakes and bacon right now, yummy, I will have to be careful with the bacon. I need to commit an hour a day to exercise. Right now I look like an elementary school kid drew a picture of me, a big circle and some lines. I would like to surf and golf again, even badly. Red blood cells would help and we're almost there.
My thoughts and prayers are with Erica this week, and with the poor guy that wins the election.
Saturday, November 01, 2008
Get up and Boogie
My WBCs shot up yesterday to 4.3, most other numbers rising as well, so my health is good. I had to sit in the ITA for 4 hours getting magnesium and potassium. I was having serious hot flashes from the magnesium and had to ask them to turn the infusion rate down.
Beauchemin is here and pushing me off the couch. I have to remind him I am still unwell, but he is right in pushing me to do what I can. I would prefer to lie on the couch and watch videos, but we're going to end up walking around somewhere. We walked to the library and around downtown a little last night. We watched the Celtics crush Chicago last night, then watched some 'Flight of the Conchords', very funny guys. He made us some steel oatmeal for breakfast, with bananas and brown sugar, yummy.
So just a short post to say I am fine, weekend off from the ITA, and I hope Mike doesn't kill me.
Beauchemin is here and pushing me off the couch. I have to remind him I am still unwell, but he is right in pushing me to do what I can. I would prefer to lie on the couch and watch videos, but we're going to end up walking around somewhere. We walked to the library and around downtown a little last night. We watched the Celtics crush Chicago last night, then watched some 'Flight of the Conchords', very funny guys. He made us some steel oatmeal for breakfast, with bananas and brown sugar, yummy.
So just a short post to say I am fine, weekend off from the ITA, and I hope Mike doesn't kill me.
Thursday, October 30, 2008
Relief pitcher
Well, Dana finally succumbed to the head cold she thought she was getting for the last 4 days. We called young John up from the bullpen, and he came up Tuesday night. Dana left Wed. morning for SLO after cleaning the apartment; she did not want to leave any cold germs behind. When I talked to her yesterday, she was cleaning in SLO.
John and I had a shaky start because I forgot my cell phone, and left him bad instructions to the Stanford Cancer Center. Normally I call when I am just about done; it can be 2 hours or it can be 4 hours. I used the house phone to call John, and he left to come get me, but I knew when he didn't show in 15 minutes that my directions failed him. Eventually he showed, bent but not broken.
Everything is fine with me. My WBCs are at 3.3, big jump Wed. from 2.7. All other counts are up and looking good. The doc looked in my mouth yesterday and said 'Could be a month before that heals completely.' Bummer. The sore mouth is making food choices for me, and forcing me to blend things that aren't naturally blended. I am down to 169 lbs, from 180 when I left the hospital. The 180 was a bloat; I should weigh 160-165 in fighting trim. I am nowhere near fighting trim. It's going to be a long road back.
John said to me last night 'It's like you're under house arrest,' and that's true, except I can go out. The biggest fight is with boredom. I was watching a PBS show on Brain Health, and they showed that in order to keep brain plasticity you had to learn new things. You couldn't just do crosswords or sudoku, but had to take up new skills, and force your neurons to seek out new pathways and make new connections.
So, I am searching the library for some DVDs to learn French, for the once-healed Paris trip I owe Dana. Dana wants to pick up a couple of ukuleles and learn to play, easy for her as she plays guitar, not so much for me. John and Mike both play ukulele, so that we would be entertaining as long as I don't sing. Knitting? I am always chilled because of drugs, I could make big sweaters! I should get better command of Spanish, I only have the present tense right now, and not much of it. A tenuous grasp of reality. I started on Tai Chi in Fground, seems like a lifetime ago, and I should try that some more. If any of you have recommendations of what new skill I should learn, send it on. Nothing involving heavy lifting, industrial lubricants, or live (or dead) animals please. Keep it low microbial too, and inexpensive.
Today John and I will go grocery shopping, mostly for soups. The cabinets are stocked with beans, all kinds of beans, but no soup. I won't see John for many hours; he goes to bed at like 4 am, and I get up at 7 am. Maybe around 2 we will go shopping.
John and I had a shaky start because I forgot my cell phone, and left him bad instructions to the Stanford Cancer Center. Normally I call when I am just about done; it can be 2 hours or it can be 4 hours. I used the house phone to call John, and he left to come get me, but I knew when he didn't show in 15 minutes that my directions failed him. Eventually he showed, bent but not broken.
Everything is fine with me. My WBCs are at 3.3, big jump Wed. from 2.7. All other counts are up and looking good. The doc looked in my mouth yesterday and said 'Could be a month before that heals completely.' Bummer. The sore mouth is making food choices for me, and forcing me to blend things that aren't naturally blended. I am down to 169 lbs, from 180 when I left the hospital. The 180 was a bloat; I should weigh 160-165 in fighting trim. I am nowhere near fighting trim. It's going to be a long road back.
John said to me last night 'It's like you're under house arrest,' and that's true, except I can go out. The biggest fight is with boredom. I was watching a PBS show on Brain Health, and they showed that in order to keep brain plasticity you had to learn new things. You couldn't just do crosswords or sudoku, but had to take up new skills, and force your neurons to seek out new pathways and make new connections.
So, I am searching the library for some DVDs to learn French, for the once-healed Paris trip I owe Dana. Dana wants to pick up a couple of ukuleles and learn to play, easy for her as she plays guitar, not so much for me. John and Mike both play ukulele, so that we would be entertaining as long as I don't sing. Knitting? I am always chilled because of drugs, I could make big sweaters! I should get better command of Spanish, I only have the present tense right now, and not much of it. A tenuous grasp of reality. I started on Tai Chi in Fground, seems like a lifetime ago, and I should try that some more. If any of you have recommendations of what new skill I should learn, send it on. Nothing involving heavy lifting, industrial lubricants, or live (or dead) animals please. Keep it low microbial too, and inexpensive.
Today John and I will go grocery shopping, mostly for soups. The cabinets are stocked with beans, all kinds of beans, but no soup. I won't see John for many hours; he goes to bed at like 4 am, and I get up at 7 am. Maybe around 2 we will go shopping.
Sunday, October 26, 2008
Pancakes, Yumm
That's right, pancakes this morning, pretty good! I just wanted to write a short post to correct something I said last post. The doctors do not want my WBC count to steadily increase, they expect it to get to where it is and then fluctuate but with a long-term upward trend. I found this out yesterday when my WBC dropped from 2.9 to 2.7 and started asking more questions. They will only get concerned if it trends downward. I am now on every other day visits to the Cancer Center (henceforth ITA - Infusion Treatment Area), weekends off. Cool.
GOt a package in the mail from Yawkey Way, a Red Sox calendar and program, and a little packet of Fenway dirt. I tried to cut up the dirt and snort some, for power, but it is decomposed granite and doesn't cut well. Thanks to Matt and Marian for pulling this off for me, too bad we couldn't win the ALDS. Looks like the new rule is only 1 championship per year for Boston teams, and the Celtics get '08.
My great friend Mike B has agreed to be my caregiver next weekend, so Dana can go home to SLO and see Mike and John, be home, and especially to see Mikey in a couple of plays he is, 'Wind in the Willows' and 'The Lottery', an odd combo but that's high school theater. So that will be great; she needs a break.
Pancakes this morning reminded me how damaged my nose is, my sense of smell and taste are shot. I could taste the syrup but not really the pancakes. I can taste sweet and salt, but barely. Gatorade is tart. Anyway, I was thinking of this in bed last night and pondering on it, and I wanted to relate a story, but Dana says it is too graphic, or at least needs a warning, so here is your warning: the following is a graphic story of nose clearing.
In the midst of hell, about Day 11 or 12, when my lips were those big masses of black, my nose was also a mass of black. Lying in bed trying to breathe through the mucus-laden mouth or the clogged nose was difficult. I started testing opening my nostrils wider with my fingers and discovered the tunnels were clear, I just had these clots covering the openings. The nurses all had told me not to blow my nose or I might start a nosebleed, and that wouldn't be good with no platelets. But they didn't say I couldn't undergo mining operations and clear the nasal passages.
So I carefully and meticulously removed the clots covering my nasal openings, stopped the minor resultant bleeding, and all seemed well except my nose kept collapsing on itself, the way a camel's does, closing the opening. I thought of BreatheRight Nasal Strips, and took some tape and jury-rigged my nose to stay open. Much to my delight, that lasted until the next afternoon. We bought some Nasal Strips and I started clearing my nose and using those every night, guaranteeing free air passage through at least one passage. They worked great, except for distorting my nose by noon the next day. I think this helped me heal faster.
I also discovered how beautiful everyone's eyes are. We spend very little time looking deep or long at someone's eyes, they are always flitting about, and we attach too much social significance to staring into someone's eyes. When nurses are working on your IV lines, they are often right near your face, and you can study their eyes, which I sometimes did. I discovered such a variety of colors, blues, yellows, brown, greens, all mesmerizing. Dana's blue eyes are like diamonds, with sparkling gold flecks throughout, beautiful. I bet staring into her eyes is what has me mesmerized, with her melodic voice.
GOt a package in the mail from Yawkey Way, a Red Sox calendar and program, and a little packet of Fenway dirt. I tried to cut up the dirt and snort some, for power, but it is decomposed granite and doesn't cut well. Thanks to Matt and Marian for pulling this off for me, too bad we couldn't win the ALDS. Looks like the new rule is only 1 championship per year for Boston teams, and the Celtics get '08.
My great friend Mike B has agreed to be my caregiver next weekend, so Dana can go home to SLO and see Mike and John, be home, and especially to see Mikey in a couple of plays he is, 'Wind in the Willows' and 'The Lottery', an odd combo but that's high school theater. So that will be great; she needs a break.
Pancakes this morning reminded me how damaged my nose is, my sense of smell and taste are shot. I could taste the syrup but not really the pancakes. I can taste sweet and salt, but barely. Gatorade is tart. Anyway, I was thinking of this in bed last night and pondering on it, and I wanted to relate a story, but Dana says it is too graphic, or at least needs a warning, so here is your warning: the following is a graphic story of nose clearing.
In the midst of hell, about Day 11 or 12, when my lips were those big masses of black, my nose was also a mass of black. Lying in bed trying to breathe through the mucus-laden mouth or the clogged nose was difficult. I started testing opening my nostrils wider with my fingers and discovered the tunnels were clear, I just had these clots covering the openings. The nurses all had told me not to blow my nose or I might start a nosebleed, and that wouldn't be good with no platelets. But they didn't say I couldn't undergo mining operations and clear the nasal passages.
So I carefully and meticulously removed the clots covering my nasal openings, stopped the minor resultant bleeding, and all seemed well except my nose kept collapsing on itself, the way a camel's does, closing the opening. I thought of BreatheRight Nasal Strips, and took some tape and jury-rigged my nose to stay open. Much to my delight, that lasted until the next afternoon. We bought some Nasal Strips and I started clearing my nose and using those every night, guaranteeing free air passage through at least one passage. They worked great, except for distorting my nose by noon the next day. I think this helped me heal faster.
I also discovered how beautiful everyone's eyes are. We spend very little time looking deep or long at someone's eyes, they are always flitting about, and we attach too much social significance to staring into someone's eyes. When nurses are working on your IV lines, they are often right near your face, and you can study their eyes, which I sometimes did. I discovered such a variety of colors, blues, yellows, brown, greens, all mesmerizing. Dana's blue eyes are like diamonds, with sparkling gold flecks throughout, beautiful. I bet staring into her eyes is what has me mesmerized, with her melodic voice.
Thursday, October 23, 2008
Inquiring minds
All these questions, sheesh. I struggle with this stuff too, but I get to ask the docs. Here is how things have happened:
On day Zero (September 30) I got the transfusion with Lisa's marrow cells. My WBCs were on the decline at that time. I was in the hospital and starting to get sick. The effects of the irradiation and the chemo had started to hit, and the old marrow was dying. WBC went to 0.1 (homeless WBCs hiding under trestles). Mucositis set in, we wrung our hands, but then on day 10 my WBC showed a tiny spark and went to 0.2. Engraftment of the new marrow had taken hold a little, and pumped out a few WBCs.
The WBCs steadily but slowly rose, slowed by the immunosuppressant FK506 so that no GVHD would start. On day 19 my WBCs showed a pretty solid jump from 0.7 to 1.3 and I took that to mean the engraftment was solid and we were out of the woods. However, the mucositis had taken its toll and my mouth and tongue and lips were ravaged. I was on TPN (total parenteral nutrition) through the IV, like a big bag of chicken broth, and that was all my liquid and food until day 20.
My mouth has mostly recovered. The last 2 days in the hospital I drank Ensure and tried to eat, but wasn't ready for solids. You had to take in 3000 ml a day before they'd let you go, but I think they cut me some slack since I was trying. The last of the black lips fell off 3 days ago, but I still have a few lacerations on my tongue and inside my cheeks.
The WBCs steadily but slowly rose, slowed by the immunosuppressant FK506 so that no GVHD would start. On day 19 my WBCs showed a pretty solid jump from 0.7 to 1.3 and I took that to mean the engraftment was solid and we were out of the woods. However, the mucositis had taken its toll and my mouth and tongue and lips were ravaged. I was on TPN (total parenteral nutrition) through the IV, like a big bag of chicken broth, and that was all my liquid and food until day 20.
My mouth has mostly recovered. The last 2 days in the hospital I drank Ensure and tried to eat, but wasn't ready for solids. You had to take in 3000 ml a day before they'd let you go, but I think they cut me some slack since I was trying. The last of the black lips fell off 3 days ago, but I still have a few lacerations on my tongue and inside my cheeks.
Now, I'm slowly adding solid foods. I had cream of wheat and scrambled eggs for breakfast, with tea, gatorade, then, a tuna and non-dairy cheese sandwich for lunch with a non-dairy milk shake. I'll probably have whatever the SuperCareGiver whips up for dinner (soup?).
We are settling in to this phase. Today was typical of our new routine. We left here at 9:40 this am for my 10am appointment at the Cancer Center. I am mask-free here in the apartment, and in the car if the windows are up, and in the rooms of the Infusion Treatment Area (ITA) in the Cancer Center as it is HEPA filtered. I do have to wear the mask in the waiting room. I sat around and read the paper and got into the ITA at 10:30.
The ITA rooms hold about 6 patients in a common room, separated by curtains. You can have guests. They draw my blood tests and check me out. You sit in a recliner and have your own TV. I read. Once a week I get a chest X-Ray. Once my blood tests come back in an hour or two, they give me whatever they need to (potassium, magnesium, blood), hook my fanny pack IV up with a new load of FK506, give me new batteries, ask me for my list of everything I ate and drank, then away I go. Today was unusual because they reduced my FK506 dose to an amount they can handle with pills, so I was liberated from the fanny pack, no tubes, for now.
I call Dana's cell when I'm finished and she is there in 5 minutes. We left there today at 12:00. I put on my mask and walked out to meet her, got in the car, took off my mask, we make out, and then we went to the grocery store. I have to wear the mask in the store. I have a brand new gut, so I am off coffee for now and maybe for good. Bland diet. I shopped in the baby food aisle today but didn't buy any. We bought puddings, teas, lactose-free dairy, eggs, sorbets and Sprite. My digestive system is like a kid's, and I will coddle it along until my mouth finishes healing.
Today my WBC is 2.9. Normal is 4.0-11.0. The docs are looking for a steady slow rise in WBCs, not like last time. They do not want the WBCs to jump and decide to go attack my liver or anything else, so slow and steady she goes. My total neutrophil count yesterday was 1.84, above the minimum, meaning I am not neutropenic (immune deficient), but the rules are different for BMT patients, so the mask and dietary rules apply regardless.
The ITA rooms hold about 6 patients in a common room, separated by curtains. You can have guests. They draw my blood tests and check me out. You sit in a recliner and have your own TV. I read. Once a week I get a chest X-Ray. Once my blood tests come back in an hour or two, they give me whatever they need to (potassium, magnesium, blood), hook my fanny pack IV up with a new load of FK506, give me new batteries, ask me for my list of everything I ate and drank, then away I go. Today was unusual because they reduced my FK506 dose to an amount they can handle with pills, so I was liberated from the fanny pack, no tubes, for now.
I call Dana's cell when I'm finished and she is there in 5 minutes. We left there today at 12:00. I put on my mask and walked out to meet her, got in the car, took off my mask, we make out, and then we went to the grocery store. I have to wear the mask in the store. I have a brand new gut, so I am off coffee for now and maybe for good. Bland diet. I shopped in the baby food aisle today but didn't buy any. We bought puddings, teas, lactose-free dairy, eggs, sorbets and Sprite. My digestive system is like a kid's, and I will coddle it along until my mouth finishes healing.
Today my WBC is 2.9. Normal is 4.0-11.0. The docs are looking for a steady slow rise in WBCs, not like last time. They do not want the WBCs to jump and decide to go attack my liver or anything else, so slow and steady she goes. My total neutrophil count yesterday was 1.84, above the minimum, meaning I am not neutropenic (immune deficient), but the rules are different for BMT patients, so the mask and dietary rules apply regardless.
Here is the latest photo, with another one I took in the depths of hell (10/12), for comparison.
Tuesday, October 21, 2008
Phase IV Begins
At 9:00 this morning the whole doctor team came in, all smiles and handshakes and congratulations; everyone loves a victory! Dana missed it, too bad, but she was busily cleaning and preparing the apartment for my arrival. When Dana arrived at 9:30 we had to meet with pharmacists, IV pack nurses, the nutritionist, and the charge nurse, and Dana had to pass the dressing rechange test (she aced it). We got out of the hospital at 12;30, ahead of schedule. Dana and I are now in the apartment in Palo Alto, and it is perfect. 5 minutes to the hospital, very clean and homey feeling.
So now begins phase IV, daily visits to the Cancer Center, fine tuning the immunosuppessant FK506 so that the new marrow does not go into attack mode, and treating any of the myriad other problems that could occur - liver and kidney being the scariest, but many others as well. So we await now and see if I continue to get lucky and graft versus host disease is minor. Day 90 is now the big target date. They say nobody goes home before 90 days, so that is the target to be in SLO, December 29.
My feeling is this bone marrow has settled in just fine, is working at making product, and I will get some annoying level of gvhd just to remind me not get cocky. My skin has always been my weak point, so that is my guess for minor problems.
I have to tell you that the last 21 days, especially days 6-18, was not like any of my other stays. Those were picnics, walks in the park. This was thru the gates of hell and back again, and don't I pity all those patients that can't tolerate pain and discomfort as it seems I can, nor heal as fast. I am blessed in this department.
Around Day 3 the mucositis set in. Remember the cross-country spikes from high school, with 1" spikes from the toe to the ball of the foot? Imagine a little cross-country meet in your mouth, starting on your lips and ending at your butt. I have said I was just a big sick tube, but not until this started did I really feel like it. That is when I last blogged in earnest. The way they deal with the pain of mucositis is by allowing the patient to control the flow of pain meds, pushing a button as often as every 15 minutes to deliver more fentanyl. (This part is somewhat hazy.)
This is all controlled by hooking you up to a monitor that reads out your vital signs (BP, pulse ox, temp) at the nurses station and triggers an alarm if anything goes wrong. So the tendency may be to overmedicate, and being aware of that, I didn't. But the system limits you much further - you are tethered to the IV pole, to the Pain Control Access system, and to the power to run this. You do not drink, eat or move except to pee and poop. I started getting all my action in my dreams, and in my bathroom attempts.
I was horrified to find myself crapping my pjs just reaching for something, or waking and trying to untether in time to make the bathroom. Not just once or twice, and I had asked the docs to reduce the fentanyl dose that was delivered. I would clean up as best I could, and then reasoned that it was the hospital's system that got me here, and hit the call button for help. Turns out that this was not uncommon.
More horrific than those accidents were the dreams. I would have to work my way up out of a dream to prove it weren't real. I woke up one night and yelled "I did not kill my dog!" I do not remember the dream, only that it was so real I was sure I had killed Woody, I had this awful sense of shame and hopelessness, and only by waking could I make it go away. I was shredded. I had other dreams about the Beauchemins involving lots of junk fancy cars parked throughout a big house, and another where Dana and I were trying to hug but we kept passing through each other. I was sure one of us must be dead, and had to swim up to reality to make sure we weren't.
In the midst of all this dreaming, I was actually making the motions that were going on in my dreams. My IV alarms started going off more frequent, and I had twisted IV lines. The nurses confronted me to say that I was twisting my lines on purpose, some nurses had seen me working at the lines. I was not in my best arguing form at 2 am on fentanyl, but managed to ask why I would do that? I thought maybe I was just twisting and turning in my sleep.
Dana pointed out to me that when I napped during the day that my hands were very busy, trying to do some actions. One night (around Day 12) I had a dream that Mikey had been abducted by Chinese mafia, and there was some overall sense that exceeding bad harm was coming to him. He was about 8 or 9 years old. When I finally rescued him he was in this sack, and I struggled mightily to open this sack. I awoke and found I was trying to open my blanket, a single layer of cloth.
I asked the doctor to untether me from the fentanyl and I would deal with the pain on my own. I did not hit the more fentanyl button for a couple of days, so he unhooked me. I rode it out from there with much better results. Other than the dry heaves from swallowing blood and mucus, the pain was already abating, so it worked out just fine. The dry heaves make a great abs workout, by the way.
While I was down there in hell, I could feel the support, the hands reaching down to me, trying to pull me up. I wanted to write a blog entry, but literally could not without ruining my laptop. But I knew you were all there, pulling for me, and I really thank you for all that support and caring, for helping me and my family rise up from the depths. The road is not finished, but that was a hard stretch and with all your help we are through it.
So now begins phase IV, daily visits to the Cancer Center, fine tuning the immunosuppessant FK506 so that the new marrow does not go into attack mode, and treating any of the myriad other problems that could occur - liver and kidney being the scariest, but many others as well. So we await now and see if I continue to get lucky and graft versus host disease is minor. Day 90 is now the big target date. They say nobody goes home before 90 days, so that is the target to be in SLO, December 29.
My feeling is this bone marrow has settled in just fine, is working at making product, and I will get some annoying level of gvhd just to remind me not get cocky. My skin has always been my weak point, so that is my guess for minor problems.
I have to tell you that the last 21 days, especially days 6-18, was not like any of my other stays. Those were picnics, walks in the park. This was thru the gates of hell and back again, and don't I pity all those patients that can't tolerate pain and discomfort as it seems I can, nor heal as fast. I am blessed in this department.
Around Day 3 the mucositis set in. Remember the cross-country spikes from high school, with 1" spikes from the toe to the ball of the foot? Imagine a little cross-country meet in your mouth, starting on your lips and ending at your butt. I have said I was just a big sick tube, but not until this started did I really feel like it. That is when I last blogged in earnest. The way they deal with the pain of mucositis is by allowing the patient to control the flow of pain meds, pushing a button as often as every 15 minutes to deliver more fentanyl. (This part is somewhat hazy.)This is all controlled by hooking you up to a monitor that reads out your vital signs (BP, pulse ox, temp) at the nurses station and triggers an alarm if anything goes wrong. So the tendency may be to overmedicate, and being aware of that, I didn't. But the system limits you much further - you are tethered to the IV pole, to the Pain Control Access system, and to the power to run this. You do not drink, eat or move except to pee and poop. I started getting all my action in my dreams, and in my bathroom attempts.
I was horrified to find myself crapping my pjs just reaching for something, or waking and trying to untether in time to make the bathroom. Not just once or twice, and I had asked the docs to reduce the fentanyl dose that was delivered. I would clean up as best I could, and then reasoned that it was the hospital's system that got me here, and hit the call button for help. Turns out that this was not uncommon.
More horrific than those accidents were the dreams. I would have to work my way up out of a dream to prove it weren't real. I woke up one night and yelled "I did not kill my dog!" I do not remember the dream, only that it was so real I was sure I had killed Woody, I had this awful sense of shame and hopelessness, and only by waking could I make it go away. I was shredded. I had other dreams about the Beauchemins involving lots of junk fancy cars parked throughout a big house, and another where Dana and I were trying to hug but we kept passing through each other. I was sure one of us must be dead, and had to swim up to reality to make sure we weren't.
In the midst of all this dreaming, I was actually making the motions that were going on in my dreams. My IV alarms started going off more frequent, and I had twisted IV lines. The nurses confronted me to say that I was twisting my lines on purpose, some nurses had seen me working at the lines. I was not in my best arguing form at 2 am on fentanyl, but managed to ask why I would do that? I thought maybe I was just twisting and turning in my sleep.
Dana pointed out to me that when I napped during the day that my hands were very busy, trying to do some actions. One night (around Day 12) I had a dream that Mikey had been abducted by Chinese mafia, and there was some overall sense that exceeding bad harm was coming to him. He was about 8 or 9 years old. When I finally rescued him he was in this sack, and I struggled mightily to open this sack. I awoke and found I was trying to open my blanket, a single layer of cloth.
I asked the doctor to untether me from the fentanyl and I would deal with the pain on my own. I did not hit the more fentanyl button for a couple of days, so he unhooked me. I rode it out from there with much better results. Other than the dry heaves from swallowing blood and mucus, the pain was already abating, so it worked out just fine. The dry heaves make a great abs workout, by the way.
While I was down there in hell, I could feel the support, the hands reaching down to me, trying to pull me up. I wanted to write a blog entry, but literally could not without ruining my laptop. But I knew you were all there, pulling for me, and I really thank you for all that support and caring, for helping me and my family rise up from the depths. The road is not finished, but that was a hard stretch and with all your help we are through it.
Sunday, October 19, 2008
Up from the depths
Friends, family, I am back. The docs told me this am that my WBCs had reached 1.3, up from .7 the day before, and I would leave the hospital for the local apartment on Tuesday. Hooah! I would've blogged sooner, but I finally have slowed the flow of blood, mucus, and saliva so that I can write. I haven't a cup of coffee in 3 weeks, nor anything to eat, but that new bone marrow from Lisa has taken root and is pumping out WBCs.
Dana and Mike fittingly ran the Nike 1/2 marathon today and are doing well. Just a short blog for now, more gritty details to follow as I rise firther from the depths.
Dana and Mike fittingly ran the Nike 1/2 marathon today and are doing well. Just a short blog for now, more gritty details to follow as I rise firther from the depths.
Wednesday, October 15, 2008
Still waiting
I've been waiting to have some good news to post but unfortunately there isn't any yet. John is in and out of fitful sleep and saying strange things, probably from the med cocktails they tell me, though he is off pain meds for the most part. We are at day 15 and they had told us engraftment normally takes place between days 10 - 14 so any day now things should start to turn around.
Hopefully the next post will have good news.
Dana
Hopefully the next post will have good news.
Dana
Friday, October 10, 2008
Before and After
It's Dana again. John has just finished showering (sheesh, what a struggle while attached to eight lines) as I started typing this. I asked him if he wanted me to write anything here for him. These are his words.
Far off, slowly, a figure emerges. As he approaches, the damage is evident. He moves like a wounded animal.
In earlier days there was no time measure for a round of a fight. It ended when it needed to. I certainly needed it to end. I don't know how long this round has been going on, but it is hell. The only reason I'm writing this now is because Dana volunteer to and she had taken some pictures.
I've been slammed hard and long. Since the transplant I've had no food or drink. I'm tethered to an IV pole. I lie here in a semi-stupor all day fantasizing about ice water.
Dana is back writing now. John is holding pretty steady. He continues to be in great discomfort but he was still able to beat me at Cribbage yesterday. He is running a slight fever off and on which they are controlling with Tylonol. They are giving him antibiotics just in case there is any infection, but they say some slight fever is common. The mucositis is the most difficult to deal with. His mouth and esophagas are swollen, raw, and bloody. He has a rash on his back, his limbs are swollen, and there is some fluid in the lower lungs. All this is being addressed. He is still on IV pain meds but they have reduced them, at his request, so that he can read. He has a button he can push every 15 minutes for more pain med relief if he wants to. The med cocktail has made him shaky and weak.
Here is a before and after. The squeamish may wish to look away. It really does look as if he's been in the ring with Mike Tyson. Our hero is down but not out and his opponent isn't pulling any punches. If the docs are right, this round will last another week or so. I wish there were some way to make the time pass more quickly, but on we go. These photos were taken a week apart.
Wednesday, October 08, 2008
Calling all WBCs!
Dana here again.
I know they described all this. I know they told us what could, probably would, happen as John went through this process. But somehow as we listened, I think John and I both felt that he would be spared. Not that we thought he'd breeze through, but he had handled everything they'd thrown at him so well, so far.
I came face to face with the reality of this devastating process when I walked into John's room yesterday. He looks gawdawful and he feels worse. He has not been able to even listen to me read your blog comments yet, but I did read him a couple of emails today and will be reading him your comments a few at a time over the next few days. He slips in and out of sleep, mostly drug induced I think. He rallied a bit when young John and I came in and even cracked a couple of jokes. When I asked him if he'd missed me his eyes welled with tears so I am happy to be back and by his side, even if it is just to sit here as he sleeps.
Dr. L. came in today and said he is doing really well. He said he knows it's hard to see that but that he is very happy with how things are progressing. The nurses say he is a good patient and is doing everything he is supposed to be doing, his mouth care, his breathing exercises, etc. We are waiting for engraftment which we thought would happen in 10 to 14 days but Dr. L said today it might be more like day 20. Here is a description of engraftment from the National Marrow Donor website. They explain it better than I could.
For more detail and information I will refer you to the website:
http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/Waiting_for_Engraftment_Days_0/index.html
So, time to let those WBCs know their vacation is over and they need to head on over, the sooner, the better! I've read in the BMT blogs of others that things start to improve and heal almost immediately once the body starts producing WBCs again.
Young John came back up with me and helped me move our stuff over to the new place. I know his dad was happy to see him. I wish Mike could visit but it is probably better not to have him see his dad this way, it would just upset him. Young John handled it well and was a good support for me. I haven't had a chance to settle in to the new place yet but it will be great to be so close to the hospital now. It is less than ten minutes away.
John's pain is managed for the most part but he is really miserable. He doesn't want guests or phone calls right now. He just wants to get through this in his own "warrior" way. He can't have flowers, he can't eat, he can't read, he can't even get up and read email, so there is very little you can do right now. He would probably appreciate a card or a picture to put up in his room but I can't think of much else. He knows you are all thinking of him and he will get through this. This part is just very hard.
The address to send mail here at the hospital is:
Stanford University Medical Center
Attention: John Fiore Unit E-1
300 Pasteur Drive
Stanford, CA 94305
(And if anyone has any pull with the Red Sox, please feel free to forward his address to them.)
Thank you all for your comments, notes, prayers, and good wishes. They help get us through.
I know they described all this. I know they told us what could, probably would, happen as John went through this process. But somehow as we listened, I think John and I both felt that he would be spared. Not that we thought he'd breeze through, but he had handled everything they'd thrown at him so well, so far.
I came face to face with the reality of this devastating process when I walked into John's room yesterday. He looks gawdawful and he feels worse. He has not been able to even listen to me read your blog comments yet, but I did read him a couple of emails today and will be reading him your comments a few at a time over the next few days. He slips in and out of sleep, mostly drug induced I think. He rallied a bit when young John and I came in and even cracked a couple of jokes. When I asked him if he'd missed me his eyes welled with tears so I am happy to be back and by his side, even if it is just to sit here as he sleeps.
Dr. L. came in today and said he is doing really well. He said he knows it's hard to see that but that he is very happy with how things are progressing. The nurses say he is a good patient and is doing everything he is supposed to be doing, his mouth care, his breathing exercises, etc. We are waiting for engraftment which we thought would happen in 10 to 14 days but Dr. L said today it might be more like day 20. Here is a description of engraftment from the National Marrow Donor website. They explain it better than I could.
Waiting for Engraftment: Days 0-30
After your bone marrow transplant you will have low blood counts. This means that you have fewer than normal numbers of red blood cells, white blood cells and platelets. Over time, the donated cells you received for your transplant start to grow and make new blood cells. This is called engraftment. Engraftment is an important milestone in your transplant recovery.
Infections
Until your donated cells engraft, you will have low counts of all types of blood cells. You will have very few white blood cells to fight infections. This means you can get an infection easily and infections during this time can be serious, even life-threatening. Your transplant team will take steps to protect you from infections. You will be at risk for infection for many months, but the period before engraftment is a time of especially high risk.
For more detail and information I will refer you to the website:
http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/Waiting_for_Engraftment_Days_0/index.html
So, time to let those WBCs know their vacation is over and they need to head on over, the sooner, the better! I've read in the BMT blogs of others that things start to improve and heal almost immediately once the body starts producing WBCs again.
Young John came back up with me and helped me move our stuff over to the new place. I know his dad was happy to see him. I wish Mike could visit but it is probably better not to have him see his dad this way, it would just upset him. Young John handled it well and was a good support for me. I haven't had a chance to settle in to the new place yet but it will be great to be so close to the hospital now. It is less than ten minutes away.
John's pain is managed for the most part but he is really miserable. He doesn't want guests or phone calls right now. He just wants to get through this in his own "warrior" way. He can't have flowers, he can't eat, he can't read, he can't even get up and read email, so there is very little you can do right now. He would probably appreciate a card or a picture to put up in his room but I can't think of much else. He knows you are all thinking of him and he will get through this. This part is just very hard.
The address to send mail here at the hospital is:
Stanford University Medical Center
Attention: John Fiore Unit E-1
300 Pasteur Drive
Stanford, CA 94305
(And if anyone has any pull with the Red Sox, please feel free to forward his address to them.)
Thank you all for your comments, notes, prayers, and good wishes. They help get us through.
Friday, October 03, 2008
Smackdown
Hi everyone, Dana here. John has gone from bad to worse as they told us he would. I saw him briefly this morning, looking really miserable, with dry heaves and a tongue so swollen and sore he had trouble speaking. The docs came in while I was there and decided to put him on continuous IV pain meds and nutrition. He can barely swallow. I think he lost this particular round but all this is right on track with what they told us would happen, so I know he'll come back strong in the next one.
He was understandably grumpy this morning and wanted me to go, so I left to take Lisa and Manuel to the airport and then drove back to SLO for the weekend. Our social worker has also encouraged me to take a couple of days off now while I can. Once he is released from the hospital he will need a caregiver (me) 24/7 for about three months up there in Palo Alto.
A note on the shower thing. The docs strongly encourage him to get up and shower every day not only to get his lungs expanding a bit and avoid issues there, but also to wash the bacteria and such from his skin as he now has NO working cells to fight off infection.
Bill, congrats on getting through BMT and getting back to the gym. I'm happy to hear your taste buds are working again! Spencer, we look forward to the day you and John can meet mask to mask. I hope you both, along with Rich, will continue to check in here. It's really encouraging to hear from you who have been through this and are coming out the other side.
Ellen, thanks for checking on our boys. Looks like they are doing well and that is a big load off our minds.
Pat and Bruce, thanks for delivering lasagna and flan to Mountain View fer heaven's sake! Gosh darnnit! It was delish!
Lisa and Manuel, what can I say? We are eternally grateful. You have been so gracious and giving. You have some goooood karma coming your way!
Pat, Mac, Mo, and Lisa S, thanks for keeping us entertained. I doubt John will blog for the next few days but I will try to keep you all posted, get it?
Posted.
I will leave you with this lovely poem written by Barbara Crooker for her friend who was undergoing BMT and, I'm imagining, was about at the point that John is now.
The jonquils. They come back.
They split the earth with their green swords,
bearing cups of light.
The forsythia comes back,
spraying its thin whips with blossom,
one loud yellow shout.
The robins. They come back.
They pull the sun
on the silver thread of their song.
The iris come back.
They dance in the soft air
in silken gowns of midnight blue.
The lilacs come back.
They trail their perfume
like a scarf of violet chiffon.
And the leaves come back,
on every tree and bush,
millions and millions of small green hands
applauding your return.
--by Barbara Crooker, The Cancer Poetry Project
Xs and Ohs,
Dana
He was understandably grumpy this morning and wanted me to go, so I left to take Lisa and Manuel to the airport and then drove back to SLO for the weekend. Our social worker has also encouraged me to take a couple of days off now while I can. Once he is released from the hospital he will need a caregiver (me) 24/7 for about three months up there in Palo Alto.
A note on the shower thing. The docs strongly encourage him to get up and shower every day not only to get his lungs expanding a bit and avoid issues there, but also to wash the bacteria and such from his skin as he now has NO working cells to fight off infection.
Bill, congrats on getting through BMT and getting back to the gym. I'm happy to hear your taste buds are working again! Spencer, we look forward to the day you and John can meet mask to mask. I hope you both, along with Rich, will continue to check in here. It's really encouraging to hear from you who have been through this and are coming out the other side.
Ellen, thanks for checking on our boys. Looks like they are doing well and that is a big load off our minds.
Pat and Bruce, thanks for delivering lasagna and flan to Mountain View fer heaven's sake! Gosh darnnit! It was delish!
Lisa and Manuel, what can I say? We are eternally grateful. You have been so gracious and giving. You have some goooood karma coming your way!
Pat, Mac, Mo, and Lisa S, thanks for keeping us entertained. I doubt John will blog for the next few days but I will try to keep you all posted, get it?
Posted.
I will leave you with this lovely poem written by Barbara Crooker for her friend who was undergoing BMT and, I'm imagining, was about at the point that John is now.
The jonquils. They come back.
They split the earth with their green swords,
bearing cups of light.
The forsythia comes back,
spraying its thin whips with blossom,
one loud yellow shout.
The robins. They come back.
They pull the sun
on the silver thread of their song.
The iris come back.
They dance in the soft air
in silken gowns of midnight blue.
The lilacs come back.
They trail their perfume
like a scarf of violet chiffon.
And the leaves come back,
on every tree and bush,
millions and millions of small green hands
applauding your return.
--by Barbara Crooker, The Cancer Poetry Project
Xs and Ohs,
Dana
Thursday, October 02, 2008
Woooops
I woke up this morning, Day +2, and feel like I got hit by a truck driven by Mike Tyson. The bastard is cheating! The side effects are really piling up. The mouth sores (mucositis) are pretty painful; it feels like I chewed glass shards a few days ago, and the cuts are just starting to heal. I made the mistake today of ordering scrambled eggs with diced ham, onion, and pepper. I should've gone with just eggs. Without going into too much detail, my digestive system is off kilter but I am not nauseous. I take Imodium about every 6 hours.
I am on so many drugs that I can't keep track of them all. That was my reference to Haight Ashbury - the Summer of Love, 1967, was when Owlsley introduced LSD to the Grateful Dead and many others. I feel a bit like a chemistry lab myself, drugs to fight the effects of the drugs that are fighting the effects of drugs that are fighting the effects of irradiation and chemo drugs. Today they will give me PCA, patient control access, which is basically a button that I can push to give myself more painkiller. If the mucositis gets bad enough that I cannot eat, they will feed me with an IV drip. I had a mouthwash of lidocaine and other stuff this morning to make my mouth numb enough that I could take some pills.
Fentanyl or dilaudid for pain
Actigall protects the liver
Benadryl for allergic reactions
Compazine for nausea
Imodium for diarrhea
Triple wash to numb mouth
Cipromax antibiotic
Allopurinol protects kidneys
Bactrim for pneumonia prevention
And at least two or three others I am forgetting.
Yesterday I was visited by the physical therapy nurse, who wanted to make sure I was getting enough exercise. It is true that there are some windows during the day where I feel like I could exercise, if by that you mean get out of bed, and she wants me to do so, so she plans to bring me an exercise bicycle, and left me with a list of exercises to do. We'll do our best.
So basically I feel like crap, as planned, and it is going to get worse before it gets better. Hooah. Taking a shower is a major undertaking, trying to keep all this tubing protected and the port site dry, so I have that to look forward to every day. And to add insult to injury, the Red Sox game was not on last night.
I have prided myself on having an iron gut, but that just ended as I am writing this. I just lost breakfast and all the morning medications into the bowl. Dang, Tyson lands another big shot to the gut. I am wobbly-kneed, seeing double, but I will right myself before he closes. That is all for now.
I am on so many drugs that I can't keep track of them all. That was my reference to Haight Ashbury - the Summer of Love, 1967, was when Owlsley introduced LSD to the Grateful Dead and many others. I feel a bit like a chemistry lab myself, drugs to fight the effects of the drugs that are fighting the effects of drugs that are fighting the effects of irradiation and chemo drugs. Today they will give me PCA, patient control access, which is basically a button that I can push to give myself more painkiller. If the mucositis gets bad enough that I cannot eat, they will feed me with an IV drip. I had a mouthwash of lidocaine and other stuff this morning to make my mouth numb enough that I could take some pills.
Fentanyl or dilaudid for pain
Actigall protects the liver
Benadryl for allergic reactions
Compazine for nausea
Imodium for diarrhea
Triple wash to numb mouth
Cipromax antibiotic
Allopurinol protects kidneys
Bactrim for pneumonia prevention
And at least two or three others I am forgetting.
Yesterday I was visited by the physical therapy nurse, who wanted to make sure I was getting enough exercise. It is true that there are some windows during the day where I feel like I could exercise, if by that you mean get out of bed, and she wants me to do so, so she plans to bring me an exercise bicycle, and left me with a list of exercises to do. We'll do our best.
So basically I feel like crap, as planned, and it is going to get worse before it gets better. Hooah. Taking a shower is a major undertaking, trying to keep all this tubing protected and the port site dry, so I have that to look forward to every day. And to add insult to injury, the Red Sox game was not on last night.
I have prided myself on having an iron gut, but that just ended as I am writing this. I just lost breakfast and all the morning medications into the bowl. Dang, Tyson lands another big shot to the gut. I am wobbly-kneed, seeing double, but I will right myself before he closes. That is all for now.
Tuesday, September 30, 2008
John Fiore 2.0
12:45 pm Dana here, the first round of stem cells are in. John is feeling pretty good, if a bit woozy from all the drugs they're giving him. But the first batch of Lisa's cells are in without a hitch.
We are waiting for her to come up and celebrate with us! One more batch to go in but everything looks good!
John wrote the rest of this this morning before the transfusion:
Here we are at day zero, end of John Fiore 1.2, start of John Fiore 2.0. Everything is happening as planned. They are collecting additional cells from Lisa right now, 9:30 am, having collected yesterday as well. She must have gotten a call last night asking her to come in this morning. They have me all prepped with FK506, an immuno-suppressant, and they will use that drug to suppress the graft versus host disease reaction until the transplant takes. They will begin the transfusion some time around noon today, very anti-climactic. I did save a piece of carrot cake and asked the nurse if we could get a candle, but she didn’t think it was a good idea.
I woke up two days ago with mucositis, a very raw and sore inside of the mouth and tongue, a reaction to the irradiation and to the VP16. I just have to not grin and bear it. Oral hygiene is very important now, and difficult to accomplish with the sponge on a stick and saline solution I am restricted to using. I must be clenching my teeth all night too, because my teeth ache when I wake up. I cannot eat things like pancakes or muffins either, as they turn to mucilage instantly in my mouth.
We are waiting for her to come up and celebrate with us! One more batch to go in but everything looks good!
John wrote the rest of this this morning before the transfusion:
Here we are at day zero, end of John Fiore 1.2, start of John Fiore 2.0. Everything is happening as planned. They are collecting additional cells from Lisa right now, 9:30 am, having collected yesterday as well. She must have gotten a call last night asking her to come in this morning. They have me all prepped with FK506, an immuno-suppressant, and they will use that drug to suppress the graft versus host disease reaction until the transplant takes. They will begin the transfusion some time around noon today, very anti-climactic. I did save a piece of carrot cake and asked the nurse if we could get a candle, but she didn’t think it was a good idea.
I woke up two days ago with mucositis, a very raw and sore inside of the mouth and tongue, a reaction to the irradiation and to the VP16. I just have to not grin and bear it. Oral hygiene is very important now, and difficult to accomplish with the sponge on a stick and saline solution I am restricted to using. I must be clenching my teeth all night too, because my teeth ache when I wake up. I cannot eat things like pancakes or muffins either, as they turn to mucilage instantly in my mouth.
They rigged me up with so many connectors for IV that I look like some kids Lego or K’Nex toy. There must be at least 8 access points on my tubing. Taking a shower and keeping it all dry is a major challenge. I try to accomplish this with Ziploc bags and lots of tape, but I am too hairy for this to work well, so I use the shower wand carefully and it all works out.
I sure do appreciate all the support and positive thoughts you all have been sending my way, and wish I could have all of you come visit us here, but the reality is the smartest thing I can do for the next few months is to become very isolated. The case nurse told me to only have direct family members visit; no windows open in the apartment; new A/C filters; mask on any time outdoors, i.e. to and from the car; windows in car closed; etc. Bubble Boy.
I sure do appreciate all the support and positive thoughts you all have been sending my way, and wish I could have all of you come visit us here, but the reality is the smartest thing I can do for the next few months is to become very isolated. The case nurse told me to only have direct family members visit; no windows open in the apartment; new A/C filters; mask on any time outdoors, i.e. to and from the car; windows in car closed; etc. Bubble Boy.
Manuel, Lisa, and Dana suited up.
Dana has been out looking for a closer apartment, and I think she has found one right here in Palo Alto, so we’ll have a new address soon. It's a little retro fourplex just a couple of blocks from downtown and less than ten minutes from the hospital.
Dana has been out looking for a closer apartment, and I think she has found one right here in Palo Alto, so we’ll have a new address soon. It's a little retro fourplex just a couple of blocks from downtown and less than ten minutes from the hospital.
Sunday, September 28, 2008
Haight-Ashbury, 1967
Checked into E1 yesterday at 2:00 pm, and I have a pretty spacious single, E122, with antechamber Hepa filtering and scrub station. All visitors have to scrub and wear a gown and paper mask. You'd think you were in Beijing! We started the 'Fall of Love' party right away. I had a little foursome going with Zofran, Compazine, and Scopolamine. 'When they were.....Dancin' and singin' and movin' to the groovin. And just when it hit me, somebody turned around and shouted Play that funky music white boy!'
Everything was groovy, man, with a big dose (4000=milligrams I think) of VP16. This stuff was lights out - as they are dripping it in, I am taking a dive, feeling my blood pressure just plummet. The canvas is approaching my face, but my BP bottoms out at something like 90 over 60. I reel around the ring for the four hours of IV drip of VP16, but I am back in the game.
I feel OK this morning, just came back from a walk with Dana, Lisa, and Manuel. They have to wear gowns and masks in this room, so it is better to around, except I have to pee every 30 minutes. The docs came in this morning and said about half of patients get some level of burn from VP16, so it wasn't just radiation to fear. 50/50, good odds in Vegas!
Everything was groovy, man, with a big dose (4000=milligrams I think) of VP16. This stuff was lights out - as they are dripping it in, I am taking a dive, feeling my blood pressure just plummet. The canvas is approaching my face, but my BP bottoms out at something like 90 over 60. I reel around the ring for the four hours of IV drip of VP16, but I am back in the game.
I feel OK this morning, just came back from a walk with Dana, Lisa, and Manuel. They have to wear gowns and masks in this room, so it is better to around, except I have to pee every 30 minutes. The docs came in this morning and said about half of patients get some level of burn from VP16, so it wasn't just radiation to fear. 50/50, good odds in Vegas!
Saturday, September 27, 2008
Round two
Last Saturday we took care of one of the clerical tasks that needed to be done, the last Will and Testament and the Advanced Health Care Directive. Fortunately I don’t have much since the stock market was ravaged by the proclaimed ‘sound economy’. We still had to decide who would help Mike through the end of high school, and how I wanted my body to be used. Since I have a medically interesting body, it makes sense to send this battlefield of a body to medical research. We also documented a living will. Let me be clear here, though, I am not kicking it any time soon.
The Advanced Health Care Directive guides people at the time when I will be unable to make decisions. In that document you give authority to someone, typically a spouse. You can also direct any special instructions, and this is where it gets tricky. This is all Plan W, last resort thinking, usually something like ‘Do not resuscitate’ or ‘Send my body to Stanford Univ. Medical for research’. Here is what I gave as a special directive- if I become hopeless - send me to South Korea and enter me in a trial run that uses stem cells as a cure. Why not?
Thus I was forced to spend some time and brainspace thinking about death and dying, and that tainted my weekend a little. Like many warriors before me, I thought about running away from all this treatment, but there is nowhere to go where I won’t be dead in 2 years if untreated. And like most warriors before me, I cleaned my gun, checked my ammo, loaded grenades, and sharpened my bayonet and shovel. Hooah!
It’s almost 6am, and I need to take a shower without getting my central line wet, kind of tricky. The staff at the ITA is anxiously awaiting today’s fashion statement, which will be a very muted tan ensemble, with camo hepa filter covers on my respirator. Yesterday’s ensemble included gambling lounge pants, with cards, dice, Take A Chance, and other gambling items, very colorful, and this time I wore a nice blue shirt.
We got a call from one of the docs tonight; it seems they found more pockets of leukemia around the liver and pancreas. This means I am not in remission, but that knowledge only changes the protocol of chemo, adding a shot of Cytoxan. The next day, another doc comes by and tells me that a group of docs got together and decided the additional toxicity was not worth the result, so we continue as originally planned.
Thur 6am
I am supposed to be getting pretty ill by now, but all I am getting is a rosy glow and some mild nausea pangs. When those come, I eat something. Lisa has been getting daily shots of Neupogen, and everything is moving forward. I have been getting radiation treatments 3 times a day, 7:30, 1:30, and 3:30.
The treatment only takes a few minutes of gowning up, a few more minutes to get set in the right spot, strapped in the sling that will catch me if I collapse. They then align the radiation blocks with the marks they have drawn on my chest and back that outline my lungs, and tape it all in place. Once that most critical alignment is all set, the nurses leave the room and turn on the beam for eight minutes of radiation. There is no sensation from the radiation; if there weren’t a sound of buzzing machinery, and a sign across the room that says ‘Beam On’, you’d never know you were being zapped.
The only thing I have to do in this is stand perfectly still for eight minutes. And that is a challenge. I try to stay occupied through this, counting the tiles on the floor, inventorying the room, trying to determine if the flashes of ‘Beam On’ are one-second intervals. Every two minute or so the nurse checks me over the PA system, and I let her know I am OK.
Friday – I am done with radiation, kept my queasy gut in check, thanks to Zofran and Atavan and Gatorade. The nurses in radiation therapy have taken care of me in these treatments, and the nurses in the recovery area kept me comfortable and informed. They are surprised that I am eating, and so am I since I do not feel that hungry.
All this week I have been lugging around a shopping cart with a backpack strapped to, containing 4 liters of solution, dripping at 150ml/hour. Just before I leave on Friday, they give me a new bag and up the rate to 250ml/hour. If I see a fire on the way back to the apartment I could put it out.
The Advanced Health Care Directive guides people at the time when I will be unable to make decisions. In that document you give authority to someone, typically a spouse. You can also direct any special instructions, and this is where it gets tricky. This is all Plan W, last resort thinking, usually something like ‘Do not resuscitate’ or ‘Send my body to Stanford Univ. Medical for research’. Here is what I gave as a special directive- if I become hopeless - send me to South Korea and enter me in a trial run that uses stem cells as a cure. Why not?
Thus I was forced to spend some time and brainspace thinking about death and dying, and that tainted my weekend a little. Like many warriors before me, I thought about running away from all this treatment, but there is nowhere to go where I won’t be dead in 2 years if untreated. And like most warriors before me, I cleaned my gun, checked my ammo, loaded grenades, and sharpened my bayonet and shovel. Hooah!
It’s almost 6am, and I need to take a shower without getting my central line wet, kind of tricky. The staff at the ITA is anxiously awaiting today’s fashion statement, which will be a very muted tan ensemble, with camo hepa filter covers on my respirator. Yesterday’s ensemble included gambling lounge pants, with cards, dice, Take A Chance, and other gambling items, very colorful, and this time I wore a nice blue shirt.
We got a call from one of the docs tonight; it seems they found more pockets of leukemia around the liver and pancreas. This means I am not in remission, but that knowledge only changes the protocol of chemo, adding a shot of Cytoxan. The next day, another doc comes by and tells me that a group of docs got together and decided the additional toxicity was not worth the result, so we continue as originally planned.
Thur 6am
The radiation machine is big; the business end of it reminds me of the sand worms in the Dune trilogy, or in 'Tremors'.
I am supposed to be getting pretty ill by now, but all I am getting is a rosy glow and some mild nausea pangs. When those come, I eat something. Lisa has been getting daily shots of Neupogen, and everything is moving forward. I have been getting radiation treatments 3 times a day, 7:30, 1:30, and 3:30.
The treatment only takes a few minutes of gowning up, a few more minutes to get set in the right spot, strapped in the sling that will catch me if I collapse. They then align the radiation blocks with the marks they have drawn on my chest and back that outline my lungs, and tape it all in place. Once that most critical alignment is all set, the nurses leave the room and turn on the beam for eight minutes of radiation. There is no sensation from the radiation; if there weren’t a sound of buzzing machinery, and a sign across the room that says ‘Beam On’, you’d never know you were being zapped.
The only thing I have to do in this is stand perfectly still for eight minutes. And that is a challenge. I try to stay occupied through this, counting the tiles on the floor, inventorying the room, trying to determine if the flashes of ‘Beam On’ are one-second intervals. Every two minute or so the nurse checks me over the PA system, and I let her know I am OK.
Friday – I am done with radiation, kept my queasy gut in check, thanks to Zofran and Atavan and Gatorade. The nurses in radiation therapy have taken care of me in these treatments, and the nurses in the recovery area kept me comfortable and informed. They are surprised that I am eating, and so am I since I do not feel that hungry.
All this week I have been lugging around a shopping cart with a backpack strapped to, containing 4 liters of solution, dripping at 150ml/hour. Just before I leave on Friday, they give me a new bag and up the rate to 250ml/hour. If I see a fire on the way back to the apartment I could put it out.
Saturday 8 am
Today I check into the hospital, unit E1. I am in no hurry. Lisa is feeling some effects of her daily Neupogen injections, headaches and bone aches, all expected. I am still queasy but hanging in there, definitely took some hard body shots plus a kick in the groin, and I feel tired. I call round two a draw. Once I get in the hospital they are going to hit me with VP16 chemo, and that should kill any bone marrow I have left.
Tuesday, September 23, 2008
Glowing reviews
Las Guapas celebrate Leti's (third from left) birthday. They are all wearing tiaras.
Me and the boys. You can see where my ears were cropped.
Round 1 goes to me, in spite of some hard rights landed on my head. It wasn’t easy getting to the arena. Sunday night we were driving up to Mountain View, and I was zipping along in the left lane, going with traffic, 30 miles to go, when my right rear tire blows out. I scramble over to the breakdown lane, and then move even farther away from the 4 lanes of traffic on the 101. I am not in a great spot, kind of soft dirt, my flashlight is missing, and the spare tire is covered by luggage. Dana pleads with me to get a tow truck, but I have enough annoyance without waiting on some tow and ending up at the apartment at 1:00 am and out a boatload of money and without a car.
Plus I would have to turn in los huevos to some motorcycle gang or Alaskan for not changing my own flat. So I change the tire, and the soft spot the jack was on was problematic. I have changed tires on that car many times so it wasn’t too bad, once I got a stabilized jack, but 5 minutes in the smell of dead animal wafts over us. Dana is thinking it’s a wraith or a necromancer, and I thought we were being stalked by death, so I worked faster. The tire only had 9,000 miles on it, so I think we picked up a nail. We got to Mountain View around 10:45.
Yesterday they started me on this 4 liter IV drip of saline, nourishment, antibiotics, and a touch of potassium. I will be on this all week, so I have a little handcart and a backpack full of solution, changed every day for another 4 liters. I cannot be far from a bathroom or a bush; I am considering Depends for the rest of the week. I had another chest xray, and will get those once/week. The radiation nurses checked that the blocks made from Friday’s measurements covered my lungs, which they did.
On Monday I also had a PET scan, which is a more detailed version of a CT, to see if I was truly in remission, and danged if I wasn’t. There are nests of leukemia cells near the liver and pancreas. I had asked the docs a few times what would happen in this scenario, and they said we proceed with slight modifications, an additional chemo. So when I got to the center this morning at 7:00, I was told that Blue Cross has to approve the new regimen and my radiation wouldn’t start until the 11:30 fraction. I was also told that my doc had written a strong letter to Blue Cross, and we had the consent sooner than it may have taken otherwise. I have a small room in the center, where I will pass time between treatments. It has a TV and bathroom.
Into the tanning salon I go at 11:30. The nurses in the radiation treatment facility are models of efficiency, so right on schedule we begin. I stand in the place they checked on Monday, put on the harness (catches you if you collapse), grab the handholds for support, and try not to move. The doctor assists with the first treatment, so they get the blocks in place, tape on some radiation monitors, and away we go. The radiation beam is about 30’ away, and the lights on the wall say ‘Beam On’ for the next 8 minutes. The nurse checks my status with the PA system to see how I feel, and I am ok. My hip hurts from standing still for 8 minutes, but I cannot feel any effects from radiation. I was in and out in 20 minutes.
One effect I do see is it looks like I have a mild sunburn. At 3:30 I have another treatment, backside this time, and my glow is a little better. One of the docs visits to tell me we are going to forego the additional chemo because they are concerned about the cumulative toxicity. I am fine with that, they are the pros, and a number of docs had met to discuss what course to follow. I think because I am healthy and my sister is healthy, they decided the new bone marrow and immune system would take out any transient leukemia cells. I continue landing lefts to the body.
Not to mention that the 10 radiation fractions of 120 rads (I think) each might kill any remaining leukemia cells. I had lunch and dinner at the Cancer Center, and I think the nurse was a little surprised I ate and wasn’t nauseous. We shall see after 3 more fractions tomorrow. I wore my superhero pants with a clashing shirt, and when I put on the Hepa mask I was a picture of style. It will be hard to top that. Those are solid combinations, jab jab right crossover, uppercut. So, I win round one.
Barry and Stacy, in Mike's home away from home. They are very caring and warm, and Mike will settle right in.
Plus I would have to turn in los huevos to some motorcycle gang or Alaskan for not changing my own flat. So I change the tire, and the soft spot the jack was on was problematic. I have changed tires on that car many times so it wasn’t too bad, once I got a stabilized jack, but 5 minutes in the smell of dead animal wafts over us. Dana is thinking it’s a wraith or a necromancer, and I thought we were being stalked by death, so I worked faster. The tire only had 9,000 miles on it, so I think we picked up a nail. We got to Mountain View around 10:45.
Yesterday they started me on this 4 liter IV drip of saline, nourishment, antibiotics, and a touch of potassium. I will be on this all week, so I have a little handcart and a backpack full of solution, changed every day for another 4 liters. I cannot be far from a bathroom or a bush; I am considering Depends for the rest of the week. I had another chest xray, and will get those once/week. The radiation nurses checked that the blocks made from Friday’s measurements covered my lungs, which they did.
On Monday I also had a PET scan, which is a more detailed version of a CT, to see if I was truly in remission, and danged if I wasn’t. There are nests of leukemia cells near the liver and pancreas. I had asked the docs a few times what would happen in this scenario, and they said we proceed with slight modifications, an additional chemo. So when I got to the center this morning at 7:00, I was told that Blue Cross has to approve the new regimen and my radiation wouldn’t start until the 11:30 fraction. I was also told that my doc had written a strong letter to Blue Cross, and we had the consent sooner than it may have taken otherwise. I have a small room in the center, where I will pass time between treatments. It has a TV and bathroom.
Into the tanning salon I go at 11:30. The nurses in the radiation treatment facility are models of efficiency, so right on schedule we begin. I stand in the place they checked on Monday, put on the harness (catches you if you collapse), grab the handholds for support, and try not to move. The doctor assists with the first treatment, so they get the blocks in place, tape on some radiation monitors, and away we go. The radiation beam is about 30’ away, and the lights on the wall say ‘Beam On’ for the next 8 minutes. The nurse checks my status with the PA system to see how I feel, and I am ok. My hip hurts from standing still for 8 minutes, but I cannot feel any effects from radiation. I was in and out in 20 minutes.
One effect I do see is it looks like I have a mild sunburn. At 3:30 I have another treatment, backside this time, and my glow is a little better. One of the docs visits to tell me we are going to forego the additional chemo because they are concerned about the cumulative toxicity. I am fine with that, they are the pros, and a number of docs had met to discuss what course to follow. I think because I am healthy and my sister is healthy, they decided the new bone marrow and immune system would take out any transient leukemia cells. I continue landing lefts to the body.
Not to mention that the 10 radiation fractions of 120 rads (I think) each might kill any remaining leukemia cells. I had lunch and dinner at the Cancer Center, and I think the nurse was a little surprised I ate and wasn’t nauseous. We shall see after 3 more fractions tomorrow. I wore my superhero pants with a clashing shirt, and when I put on the Hepa mask I was a picture of style. It will be hard to top that. Those are solid combinations, jab jab right crossover, uppercut. So, I win round one.
Barry and Stacy, in Mike's home away from home. They are very caring and warm, and Mike will settle right in.
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