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.
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