currently: @856 (12:32pm) on friday 7.4.08 | 1002 hours since last post
I didn't know it was impossible when I did it.
OK, so we met with Dr. Winter this morning, and while almost all the news was good, I still had my hopes up too high and have spent some disappointed hours since the appointment. Hope is a good thing but dammit, dashed hopes suck.
The details: the tumor has shrunk still more, perhaps 20 percent, and associated structures are shrinking as well. An area that appeared on the first PET scan, but wasn't clear enough to call a "tumor" or "mass" has disappeared entirely. One of the lymph nodes in the center of my chest is still showing activity, but that has also reduced since the first scan. So, all good news.
Treatment wise, they are indeed going to start radiation treatments, which will be weekdays, daily, for about 6 weeks (weekends off). Dr. Winter said there'll probably be some associated fatigue, as well as some soreness in my throat and chest, but nothing like the effects of the chemo. However... they're going to continue giving me chemo at the same time, starting in about two weeks. It'll be reduced doses given weekly. I hope they're really reduced doses.
It didn't sound like he thought surgery was an option at this point - they really need to have a specific spot to go cut something out, and it's still spread out enough between the main tumor and the lymph node that he didn't think any surgeons would recommend doing that.
I'm sort of excited and scared at the same time by all of this. I hope I tolerate the radiation+chemo thing better than I've tolerated the chemo. I don't know why I would, but perhaps the dosage will be reduced enough since they're doing it weekly that it'll be easier.
We also complained about the ongoing battles with my cough, and they're sort of bringing out the big guns now: a prescription for a morphine pill that's shown some success in cough suppression, and a nebulizer (imagine a hookah pipe for liquid drugs) along with lidocaine and albuterol and a sulfate form of morphine to put into it. As I told Jeff earlier today - if they can suppress the cough, the fatigue is much easier to deal with... I mean, it's not hard to just lay on the couch. It's the cough that makes my life really uncomfortable. Best case, the morphine pill will take care of it enough to be tolerable, and I won't have to hassle with the nebulizer; they had me use one of those during my hospital stay back in March, and it sucks because you're breathing this really heavy nebulized air into your lungs. It feels like smoke except it's not; it doesn't smell or taste smoky, and isn't warm or hot. Hard to describe, but unpleasant to breathe for any extended period.
So that's the new plan. We meet with Dr. Tran in the Harrison radiation office on Thursday, then back to see Dr. Winter the following Friday. Presumably I'll start chemo at that point.
I love you all, so much. Thank you for being my friends and family and acquaintances and strangers that I meet. I wish I could hug you all, a giant group hug, for everything you've given me over the last few months.
It's never wrong to hope. No matter what I say about disappointment, remember that.
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So you know I got a PET scan yesterday, and we're supposed to get the results tomorrow. I'll post again tomorrow after we've met with the doc.
However, I wanted to tell you about this phone call we got today while we were out; a voicemail from Doctor Winter. Normally I think, out of the blue like that, just hearing who it was from would freak me out - like why is the Doctor calling?! What could be wrong?! But the message said, "I just wanted to let you know I saw the results of the PET scan just now, and we'll talk more about it tomorrow, but it does look better, and I wanted to let you know. See you tomorrow."
Boy, it's hard not to be really optimistic about that, isn't it? I mean, I try to keep an even keel and I don't want to be stupidly optimistic about things. Hope for the best but plan for the worst, that sort of thing is how I've tried to maintain my sanity, though hoping for the best is a scary thing to do in itself. I hoped for the best on February 29th, and instead got almost the worst possible news. So it's hard for me to hope much. But God, what do I do with that message? Why would he call in advance like that, 18 hours before our scheduled appointment, just to say it "looks better", unless it looks a LOT better? See what I mean? Or perhaps he just knows we're a bit freaked out about the results of this scan because it's going to determine our treatment options for the next couple months, and therefore determine a lot of what our summer is going to be, so he's just easing our fears. Either way, I thank all the stars for Doctor Winter, who I think is the best possible person to be my doctor through this ordeal.
So. I'm hoping for the best again. I don't really know what the best is, but I'm hoping for it. I'm also hoping tomorrow isn't February 29th.
Love you guys, as always. Oh, and I've memorized all the lyrics to the Boom De Ah Da song:
I love the mountains
I love the clear blue skies
I love big bridges
I love when Great Whites fly
I love the whole world
and all its sights and sounds
Boom de ah da, boom de ah da
Boom de ah da, boom de ah da
I love the oceans
I love real dirty things
I love to go fast
I love Egyptian kings
I love the whole world
and all its craziness
Boom de ah da, boom de ah da
Boom de ah da, boom de ah da
I love tornadoes
I love arachnids
I love hot magma
I love the giant squids
I love the whole world
It's such a brilliant place
Boom de ah da, boom de ah da
Boom de ah da, boom de ah da
One last thing. Wonder of wonders, Sierra has volunteered to take care of the dishes and feeding the pets. This girl is the best 16 year old girl on Earth. Apologies to any other 16 year old girls I may have passed over in my judgment. My straight-A's, has-a-great-job, great-taste-in-boyfriends, chore-doing, loving caring mature beyond her years Sierra is the best one.
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I sure hope I can see this movie at some point. The drive-in seems like the only real choice for me - I can lay down and relax instead of sitting up and hoping my cough isn't driving people crazy.
Another blood count appointment tomorrow, preparatory to my PET scan on Wednesday and the results of that on Friday, following which we'll presumably know what our lives are going to be like for the weeks and months after that. You know what to do. :)
Things are normal, I guess. It's hard to know what normal is. I'm still coughing way too much for comfort, and after 4 months I'm mighty mighty tired of coughing. No nausea or additional hair loss. I shaved my chin and upper lip a couple days ago because what little hair was coming in was pure white. I'm not interested in having a long white beard being the only hair I have. I'm getting stronger, I think, though it's hard to tell when the act of standing up makes me start coughing. I still enjoy bedtime more than any other time of day, because I can at least look forward to several hours of not coughing and of comfortable repose.
Debbie remains the rock that holds everything together in our house. She amazes me every minute of every day. The day we met is still the most important day of my life. I love you, baby.
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I'm again sorry for not updating more often. I know there's lots of you out there for whom this is really your only source of news, but as I said last time, it's hard to generate these entries. I'm so tired.
Whine whine whine. My 4th chemo is now behind us, apparently the last for a while, as the next step is another PET scan and a re-evaluation of treatment. Our best guess is that the mass has now small enough and they're sure enough that it hasn't spread that they're going to do several weeks of targeted radiation treatments. I understand that these are much less onerous than chemotherapy; let's hope so. Debbie says that they'll do the radiation, another scan, and then surgery, followed by more chemo to eradicate any traces. Of course, she says this is because we have good insurance, so they're going to do every treatment possible. Whatever. Long term survival is the goal, so they can do whatever they like if it's going to help. My one concession to being a baby is to hope whatever they do doesn't hurt too much.
I'm still working every day (from home of course) for at least several hours. Things seem a bit unsettled at the office due to my situation; they don't know what to expect from me in terms of output or hours and they're understandably worried. They've been absolute heroes so far in my book. If you have any document management needs, call them or throw some business their way. Imagenet, LLC, Kent, Washington, 253.395.0110.
The girls are doing well. Debbie is amazing, doing so much work, doing everything basically. Any support anyone can provide her is so special, so essential to all of us, I can't even describe it. She's revealed untold strengths. Sierra and Maddie are amazing as well - Sierra has a job as an intern at a law firm and her calm support is mature beyond her years, and Madison, with her eternal optimism and cheer, is like a battery charger for us all. I am so lucky to be ensconced in the warm embrace of this family.
As for you, my friends - my gratitude for your visits and calls and emails and comments is limitless. I feel basically confined to the house most of the time due to fatigue, but with chemo behind me I'm getting stronger and gaining a little weight, and I can't wait to be able to go outside and throw the disc and visit you and show up at your parties and be the gregarious partying bastard I was before this nightmare began.
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My friends, what a time we've had the last few days. I'm sorry for not updating more often, but the effort is more than I can take, or at least it feels that way. I'm not feeling any better today than yesterday, but here I am talking to you.
The effects of this illness are insidious. There's the obvious physical discomfort and problems, the fatigue, the hair loss (ha ha! I already had no hair so I fooled them on that one!). There's the obvious psychological effects, the so-called stages of grief, blah blah. But there's other effects as well, effects that one doesn't even recognize or realize are happening. It's hard to even describe. I've become a different person, is the easiest way to say it. And not in a good way. You'll say it's understandable, that I'm under stress and physical discomfort and such. I don't know that it is, though. I snap at Debbie and the girls, I'm unresponsive, basically I'm a dick. I know I'm doing it but feel helpless to stop it. The excuse of the physical discomfort isn't enough for me anymore.
Dr. Winter prescribed an anti-depressant for me, Selexa, which I've been taking for about a week. I understand it takes perhaps 30 days to really start working. I don't really know what to expect from that.
I'm writing all this because I don't want everyone to have the wrong idea about how we're doing. I mean, we're doing OK, in fact we got some really good news today, but it's not all Boom De Ah Da by any means. We argue and fight and she thinks I'm wimping out and I think she's being a drill sergeant and the girls hate it and things are tense. I wake up crying and spontaneously burst into tears at the slightest excuse.
Part of it has to be all the drugs I'm taking. I've never been one to take medicine. OTC stuff never seemed to work for me, or did exactly the opposite of what they were supposed to do. Some of this prescription stuff actually does seem to work. On a daily basis I'm taking: Albuterol, Ativan, Xanax, Vicodin, Cheratussin, Prednisone, Selexa, and Senna. I think that's all of them. Besides the one that's supposed to change behavior, the others have to be having their effect too, right?
Still. The point is, not all sweetness and light. Debbie and I and the girls are partners in this, but it's hard, so hard, to remember that when I feel so physically bad all the time. I've been reading His Holiness' The Art of Happiness and I've been practicing some of the methods in there for staying happy and making use of ones' suffering, but again, hard, so hard. You, my friends, have helped a lot. When I see you, my heart fills up. Emails and snailmails and even gifts that I've received from you have been wonderful packets of happiness.
Anyway, my friends. This has been a bit disjointed. I apologize for that. Many interruptions; it's taken a few hours to write. I love the whole world.
Oh, the good news we got today. I had another chest x-ray yesterday (because my cough seems to be getting more common instead of going away) and Dr. Winter today said that it appears my tumor has not only continued to shrink, but that it has "collapsed" and is dying. It's hard to tell anything concrete from the x-ray; it's so low-resolution compared to a PET scan or one of the other mondo methods they use. Still. That's extremely encouraging news. I don't know what it actually means but it sounds really really good. It's all this clean living.
I just thought of this, though - if all this is true with the tumor, if it's dying and shrinking and collapsing and generally going away, that implies that the way I feel is a result solely of the chemotherapy instead of the tumor. Or mostly. The treatment is what makes me feel bad, not the disease. I have to keep reminding myself that the chemo is a life-giving process. It's saving my life, even though it's making me feel so terrible. This is something that's specifically mentioned in the Dalai Lama's book - that without suffering, our psyche cannot learn and grow. Our suffering makes us stronger. It's sort of elegant and noble when put that way. Doesn't feel like either, but I have to keep my mind on the good things. It's making me stronger. It's healing me. It's making me happier, and that will make my family happier.
It's such a brilliant place.
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Jeff, Kai, and Kiki stopped by tonight, followed closely by my Dad. We had nice visits and then they disappeared into the nebulous world that I understand exists outside our front door. I can't vouch for this "outside" thing, not having experienced it in some time. There's something pretty outside our windows, though.
Getting better, I think, a little more energy, a little more appetite. Looking forward to bedtime, the best time of the day.
Watching Friends with Debbie and Maddie right now.
I love the whole world, boom de ah da.
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Gird up your hearts for my dilemma, my friends. Prepare yourselves for my bad luck, my wrack and ruin.
I'm (sob) forced to watch American Idol every week with my wife and daughter and unfortunate vortex friend. I know. Cry for me, Argentina.
Anyway. That's over for the night so I'm just finishing up prior to heading up to my comfy bed. I think the worst of this chemo fatigue is passing; I felt a lot better today than the last several days. I'm going to read a little of The Art of Happiness, play a little Mario Kart DS, then sleep the night through. That's really exciting to me because I haven't slept through the night, really, for about 3 months. It's only been the last few days that something changed enough to allow me to sleep more than a few hours at a time.
Good night, friends. I love the whole world.
Last thing before bed: I want to specifically say thank you to Debbie for being so strong, so helpful, so single-minded and concentrated. She's saving my life if nothing else is. I love her.
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Have you seen that commercial on the Discovery Channel they've been playing lately? I love that commercial so much. It's just a bunch of scientists and Discovery personalities and regular people singing a song called "Boom De Ah Da". Go to Discovery.com and over on the right click on the Play Video link for "Musical Mashes: Boom De Ah Da". I love the whole world, it's such a brilliant place.
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Same old same old this week. Chemo on Tuesday and it didn't take long for the freight train to hit me. I can't even describe what it's like - imagine laying in bed in the morning, feeling 99% normal, getting up and going to the bathroom. Imagine at this point that you must go back to bed, breathing heavily, for a good 15 minutes to rest up from the experience. Even sitting up to eat at the dinner table overloads my system. I can do it for 10 or 15 minutes but after that I have to rest. Right now I'm sitting in my comfy chair resting up from breakfast. Hopefully in another 30 minutes or so I can get up and have some lunch or something.
My friends... I cannot thank you enough for the comments you post and the sentiments you express. It's hard for me to even read, being the gruff strong manly man I've always been. You warm my heart and make me feel anything is possible, and I can't begin to express how important that is to me. So much love for all of you.
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Had chemo today. They took it easy on me, no Avastin this time, because they're trying to get me off that in case they need to do radiation or surgery sometime in the future. Avastin is a drug that attacks and shrinks the blood vessels that feed the tumor, but it's not just the tumor, of course, it's all sorts of other things. If they do surgery on some part of me that's saturated with Avastin, there could be complications.
Anyway, only the Taxol and the Carboplatin today. We'll see how I feel in a week or ten days. They're going to do it again in three weeks, on the normal schedule.
I had an xray yesterday, a minor followup to get an idea of what's going on in there. According to the radiologist, their best guess is that the tumor has shrunken by about half so far, from 8cm to 4cm in the longest dimension. That's good news. If only two more chemo sessions would shrink it the rest of the way. Instead I suspect it's more like Zeno's paradox, splitting in half with every two treatments. At some point it'll be the size of a single atom, and then the chemo will split it and it'll be a 20-kiloton yield, centered in Port Orchard, blamed on Arabs and starting World War III. Actually I suspect if that were the case, It would probably have happened before once or twice.
I still feel pretty normal at this point, but I'm guessing the fatigue is coming down the line like a freight train, that searchlight tracking and the foghorn blowing.
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