When Scott leaves San Francisco for work in San Jose, the sky is generally just considering light.
His habit the past few months of parenthood has been to get up and take Madoc out for a walk after he showers. I don't go--it's a cancer perk that I don't have any pressure to roll out of bed and hit the operate button as fast as he does.
It's not my normal mode, though, to be so slothful--I'm actually usually up, and these days I'm huddled in front of my portable heater in the living room having coffee. In losing all my body fat, all that wonderful butt padding I used to have, I also lost my ability to stay warm; remember, I did say I was becoming Californian.
My typical day is usually a balance between "have a doctor's appointment" or don't--don't days, I try to straighten up the apartment, go to the store for dinner (his, not mine), or accomplish something from my long term list of want-tos.
Today I have no appointments, which is wonderful--I'm thoroughly sick of doctor's offices and everything associated with them. I suppose the exception right now is my oncologist's office, where I go weekly. The staff is extremely pleasant, and the news lately has been decent, so the pressure to deal is lessened considerably. It's far worse when I go to someone new and have to fill out the paperwork, a continual re-do of the same paperwork I've been doing since January when my tongue really swelled into the form of a sausage roll.
It's quite lovely here today but it's only in the mid-fifties temperature wise, and it's San Francisco damp, so I'm by the heater, and Madoc is sleeping elsewhere because it's a bit hot for him near me. As of now, I'm nervous because I suspect Scott's new Iphone will arrive and I'll need to sign for it--and I suck at paying attention to messages on my phone. This is important because our front door is programnmed to ring his phone, and he can let people in. I cannot--so for me to know that someone is here, he has to send me a message. And do I pay attention? not really.
In the early going of cell phones, I refused to have one--even when I could talk, I hated talking on the phone and nothing seemed less attractive to me than the idea that someone could call me at any moment and have certain hope of contacting me. It's perversely true that the less I can talk, the more people want to talk to me: Healthcare offices will not email one based on the hackability of email (though the ease of capturing cellular conversations seemed to have eluded them).
I'm treated, then, like a shadow in my own life because everyone has to call Scott, as if he's my parent and I'm the errant sick boy who can't be trusted to answer. Well, they could call me, and I could answer, but they wouldn't understand me. I do talk. I talk to Scott who can't hear me. I talk to our friend Terry who isn't half bad at interpreting what I say--and once some of the swelling I have in my jaw is gone, my speech will be exponentially better. Imperfect, but better.
Without 85% of my tongue, people are surprised as how well I can be understood, and often surprised when I tell them that I have a rather acute ability to taste. I know what most everything I put in my feeding tube tastes like, and I have definite favorites and not-so-favorites. The hardest thing to taste is red wine; white is much easier, it has generally brighter astringent notes that make for better "backwash" in my gullet. I know that sounds gross, but I can't think of a better way to describe it.
While I'm waiting for Fedex, I've been having Orgain Organic shakes and Odwalla Chocolate Protein Monster shakes. The Orgain vanilla flavor tastes like a Dairy Queen soft serve ice cream cone that melted--and being Midwestern, I love that. The chocolate is rich and smooth. Odwalla has too much sugar, but it tastes good. Sugar has funny lingering effect in my mouth--I taste it longer and more distinctly than virtually anything else.
I had spent the earlier part of the weekend, as I wrote before, feeling good--though by Sunday that wore off a bit. That's natural after a big chemo day, and I was incredibly fortunate to have 2 full days of feeling good AFTER they gave me the 6 hour dose. Unheard of. Also unusual--no vomits. But on that score, I have to say I've learned my lesson--I am not superman., This time, I took precautionary anti-nausea pills. To say that such pills don't work when you already think you might hurl is to be obviously oblivious.
I still have the feeling that everything is on a moving conveyor belt to the land of Better--a slow belt but steady. Like an Amazon warehouse, the belt has to stop occasionally, and occasionally wrench backwards somewhat. Problems emerge. But in small steps, the items get to the boxes, the boxes get sent. I'm early in the process, but one of these days, I'll be delivered. Hopefully to a nice address on the continent of health--something like a Sylvia Plath poem I read in "Ariel" with a whole lot happier ending.
Monday, October 28, 2013
Friday, October 25, 2013
Ray of Light
It's a sunny day in San Francisco--not a totally unusual event, but the past few days have seen late afternoon fog roll in, loll around all night, and stick around through the following early afternoon. Then, two scarce hours of sun would hit the hill we live on. The next fog would then blow in, bringing a stiff breeze with it.
Winter is approaching us here, and this will be my first resident Winter season here--I've been here in December, a Midwesterner marveling at Californians in down jackets when it's 60 degrees out--but now I'm one of those Californians. Especially as about half my blood supply is, I think, made of chemo chemicals.
So today is special in that it begins in sun, and other rays of light have poked through other clouds. Yesterday, during long chemo (when I get the full doses and it takes about 6 hours), I started to feel...good. I went to chemo in a good mood. Scott drove me and stayed with me, and somehow, that made more of a difference than when he's done that before. I saw the P.A. Kristen, and all of our news was good.
I went to the Clinical Trials team at UCSF and found that they don't think I'm a hard-up case at all. Turns out, they think it's possible I may not need them. There is a trial I might be right for in 6 weeks, but I may not need it. Erbitux, they think (and I think) is working. The shrinking underarm tumors, the recession of pain, the fact that I'm irrascible--these things point to a re-emergence of normal; a variegated normal, but normal nonetheless.
There's no one single horizon or single sun in Cancerworld, of course. We revolve around various orbs of burning hydrogen here--some signaling sort of better, some sort of worse, some just a way station on the way to others. The horizons change, too, depending upon where one is tossed out of orbit of one star onto the next. Today, the day after chemo, I feel...good. I plan on walking with Scott and Madoc. I'm hungry. I slept like a log until 8am. I rarely do that.
Yes, I still have holes in my neck that need to heal. I still have gunk in my mouth that needs to be excised, I still have a trach tube. But screw it. One thing at a time. One emergency down, the next will pop up to be solved.
Of course I'm no closer to my next Super Duper Burger (if you ever come to San Francisco you must have one). But screw it. Digest one drop of happiness before begging another.
I have spent enough time bemoaning various difficulties and hearing various prognoses that offered nothing more optimistic than the fact that I feel...good. A simple thing. This being my second day of feeling good though makes it a true landmark in that this hasn't happened in months.
Yesterday when I realized I felt good, even during chemo infusion, I spent much of my time online shopping. I had put off buying anything in case I really did only have a few months left--it would be a shame to leave new clothes that fit no one I know, and I am a practical type. But feeling good leads one to give oneself pesmission to feel better, and what better than Designer Shoe Warehouse to lift a guy higher? One pair of boots and one pair of natty oxfords later and I felt refreshed.
So I finished with cheapie cotton sweaters from Old Navy and a sale merino from Macy's realizing that I had just given myself permission to feel good, permission to be optimistic and persmission to live as long as I want to, and as long as this body can.
Now I'm going to give myself permission to get rid of this trach tube, learn how to swallow again and hopefully eat something and gain some weight. I do hate the fact that size 29 pants are big on me. And I would not mind having a bit of a butt back to sit upon...
So whatever your Friday brings, let it be a ray of light. Just give yourself permission to feel it. It sounds like an odd way of going about it, but it seems to work.
Winter is approaching us here, and this will be my first resident Winter season here--I've been here in December, a Midwesterner marveling at Californians in down jackets when it's 60 degrees out--but now I'm one of those Californians. Especially as about half my blood supply is, I think, made of chemo chemicals.
So today is special in that it begins in sun, and other rays of light have poked through other clouds. Yesterday, during long chemo (when I get the full doses and it takes about 6 hours), I started to feel...good. I went to chemo in a good mood. Scott drove me and stayed with me, and somehow, that made more of a difference than when he's done that before. I saw the P.A. Kristen, and all of our news was good.
I went to the Clinical Trials team at UCSF and found that they don't think I'm a hard-up case at all. Turns out, they think it's possible I may not need them. There is a trial I might be right for in 6 weeks, but I may not need it. Erbitux, they think (and I think) is working. The shrinking underarm tumors, the recession of pain, the fact that I'm irrascible--these things point to a re-emergence of normal; a variegated normal, but normal nonetheless.
There's no one single horizon or single sun in Cancerworld, of course. We revolve around various orbs of burning hydrogen here--some signaling sort of better, some sort of worse, some just a way station on the way to others. The horizons change, too, depending upon where one is tossed out of orbit of one star onto the next. Today, the day after chemo, I feel...good. I plan on walking with Scott and Madoc. I'm hungry. I slept like a log until 8am. I rarely do that.
Yes, I still have holes in my neck that need to heal. I still have gunk in my mouth that needs to be excised, I still have a trach tube. But screw it. One thing at a time. One emergency down, the next will pop up to be solved.
Of course I'm no closer to my next Super Duper Burger (if you ever come to San Francisco you must have one). But screw it. Digest one drop of happiness before begging another.
I have spent enough time bemoaning various difficulties and hearing various prognoses that offered nothing more optimistic than the fact that I feel...good. A simple thing. This being my second day of feeling good though makes it a true landmark in that this hasn't happened in months.
Yesterday when I realized I felt good, even during chemo infusion, I spent much of my time online shopping. I had put off buying anything in case I really did only have a few months left--it would be a shame to leave new clothes that fit no one I know, and I am a practical type. But feeling good leads one to give oneself pesmission to feel better, and what better than Designer Shoe Warehouse to lift a guy higher? One pair of boots and one pair of natty oxfords later and I felt refreshed.
So I finished with cheapie cotton sweaters from Old Navy and a sale merino from Macy's realizing that I had just given myself permission to feel good, permission to be optimistic and persmission to live as long as I want to, and as long as this body can.
Now I'm going to give myself permission to get rid of this trach tube, learn how to swallow again and hopefully eat something and gain some weight. I do hate the fact that size 29 pants are big on me. And I would not mind having a bit of a butt back to sit upon...
So whatever your Friday brings, let it be a ray of light. Just give yourself permission to feel it. It sounds like an odd way of going about it, but it seems to work.
Monday, October 21, 2013
Confessions of a Whiney Little Bitch
Let me just get this off my chest--one of the biggest problems with so-called reality television is the phenom of the whiney little bitch.
You will encounter said creature on shows ranging from The Real World to House Hunters. For what I watch, House Hunters, the WLB walks through three properties with a 100K budget and says: The rooms are too small! I wanted granite! I wanted stainless steel appliances!
On shows about Kar-trashians, the WLB is whoever is first to, in that stupid baby voice, complain about their overwrought schedule--at least for what I've seen as I speed past with the remote.
Yet, the WLB lives in us all, and I'm no exception--in fact, lately, I've been seriously indulging my WLB side and frankly, I am tired of it. My nature isn't really accommodating to the WLB attitude. I was raised by no-nonsense people in a no-nonsense manner. My parents were both beset by a number of medical problems--heart, diabetes, cancer, lower lung disease (my genetics are truly not exceptional), and I never heard them bitch about any of it. They didn't like it, I was certianly aware of that, but they treated facts as facts and not as advice given to people who like to suffer.
I'm only half as good as they were about my own cancerous situation--somedays, the WLB takes me over and I channel so much self pity that in retrospect I'm sickened by it. I admit, I'm due some private pity--but private is the operative word. That's the Hoosier in me; the Northeastern small farm town stoic Hoosier thing is not conducive to WLB behavior. In fact, it loathes nothing more than the sign of weakenss in the self and is sympathetic to nothing more than the revealed sign of weakness in others--as long as it's quickly covered up again.
In the let-it-all-hang world, that virtue is no longer widely currency in virtueville. We're all supposed to honestly share our feelings about the conditions we experience and those of the world around us. We've set up an entire electronic system where posting those feelings is both expected and welcomed--likeable, thumbs-upped. Comments of support crowd postings of WLBness, my own included.
I am, though, thoroughly ashamed when I realize that though I can't eat or speak well, I am alive. I live very decently. I'm surrounded by love. I can walk. I can have a healthy crap. My brain is sharp, my humor is still with me. I read great books that I can buy from Amazon at a moment's notice. My credit rating is excellent.
Some people believe, much to their credit, that there is no hierarchy to disability--perhaps to my discredit, I believe there is--and my problems come far down the list from those who have lost major systems in their bodies and are tubed, who can't eat, speak, walk, or whose thoughts find no way out of their heads.
This weekend, we went out of San Francisco to a cabin in Guerneville on the Russian River with our friend Margie, visiting from Chicago. The cabin was surrounded by huge redwoods, Guerneville is charming, we all had a great time.
Yet, even in that beautiful setting I still had twinges of WLB--when Margie had this wonderful pork for dinner, when we stopped at an organic bakery in Freestone and I realized that there was no way that sticky bun would ever fit in a feeding tube.
I don't know if it will ever stop. Funny though--Scott hates to cook and I enjoy cooking--so I make as many of his dinners as I have strength and opportunity to make, and I enjoy doing it. If you like to cook, the look of satisfaction on the face of people who eat what you make is priceless. It's better than thank you.
I made dinner last night after we got home for Margie and Scott and our friend Terry--to whom I owe many dinners. A curried, coriandered chicken breast over risotto with roasted asparagus--and everyone loved it. The only downer was the smell of sticky buns, left over, from the bag on the counter.
Maybe certain smells or memories or textures are triggers for WLB syndrome--I don't know. All I know is that to defeat a powerful enemy like the seductive nature of self pity, one has to be vigilant. In the midst of beauty, happiness, accomplishment, there it was--as unwelcome as a fart in an elevator.
Yes, my name is Mark and I have cancer. It's aggressive and doesn't want to go away. I have to have more than the normal cycle of treatment. I hate it.
But I do not want to feel sorry for myself. I don't want to talk about how small those rooms are, or how much better I'd feel if that refrigerator were shiny, silvery and contemporary. I want to talk about what I'm going to eat when I get to Quebec next August and watch Scott in the Ironman competition--so far, poutine is on the menu. What else should I hope to have?
You will encounter said creature on shows ranging from The Real World to House Hunters. For what I watch, House Hunters, the WLB walks through three properties with a 100K budget and says: The rooms are too small! I wanted granite! I wanted stainless steel appliances!
On shows about Kar-trashians, the WLB is whoever is first to, in that stupid baby voice, complain about their overwrought schedule--at least for what I've seen as I speed past with the remote.
Yet, the WLB lives in us all, and I'm no exception--in fact, lately, I've been seriously indulging my WLB side and frankly, I am tired of it. My nature isn't really accommodating to the WLB attitude. I was raised by no-nonsense people in a no-nonsense manner. My parents were both beset by a number of medical problems--heart, diabetes, cancer, lower lung disease (my genetics are truly not exceptional), and I never heard them bitch about any of it. They didn't like it, I was certianly aware of that, but they treated facts as facts and not as advice given to people who like to suffer.
I'm only half as good as they were about my own cancerous situation--somedays, the WLB takes me over and I channel so much self pity that in retrospect I'm sickened by it. I admit, I'm due some private pity--but private is the operative word. That's the Hoosier in me; the Northeastern small farm town stoic Hoosier thing is not conducive to WLB behavior. In fact, it loathes nothing more than the sign of weakenss in the self and is sympathetic to nothing more than the revealed sign of weakness in others--as long as it's quickly covered up again.
In the let-it-all-hang world, that virtue is no longer widely currency in virtueville. We're all supposed to honestly share our feelings about the conditions we experience and those of the world around us. We've set up an entire electronic system where posting those feelings is both expected and welcomed--likeable, thumbs-upped. Comments of support crowd postings of WLBness, my own included.
I am, though, thoroughly ashamed when I realize that though I can't eat or speak well, I am alive. I live very decently. I'm surrounded by love. I can walk. I can have a healthy crap. My brain is sharp, my humor is still with me. I read great books that I can buy from Amazon at a moment's notice. My credit rating is excellent.
Some people believe, much to their credit, that there is no hierarchy to disability--perhaps to my discredit, I believe there is--and my problems come far down the list from those who have lost major systems in their bodies and are tubed, who can't eat, speak, walk, or whose thoughts find no way out of their heads.
This weekend, we went out of San Francisco to a cabin in Guerneville on the Russian River with our friend Margie, visiting from Chicago. The cabin was surrounded by huge redwoods, Guerneville is charming, we all had a great time.
Yet, even in that beautiful setting I still had twinges of WLB--when Margie had this wonderful pork for dinner, when we stopped at an organic bakery in Freestone and I realized that there was no way that sticky bun would ever fit in a feeding tube.
I don't know if it will ever stop. Funny though--Scott hates to cook and I enjoy cooking--so I make as many of his dinners as I have strength and opportunity to make, and I enjoy doing it. If you like to cook, the look of satisfaction on the face of people who eat what you make is priceless. It's better than thank you.
I made dinner last night after we got home for Margie and Scott and our friend Terry--to whom I owe many dinners. A curried, coriandered chicken breast over risotto with roasted asparagus--and everyone loved it. The only downer was the smell of sticky buns, left over, from the bag on the counter.
Maybe certain smells or memories or textures are triggers for WLB syndrome--I don't know. All I know is that to defeat a powerful enemy like the seductive nature of self pity, one has to be vigilant. In the midst of beauty, happiness, accomplishment, there it was--as unwelcome as a fart in an elevator.
Yes, my name is Mark and I have cancer. It's aggressive and doesn't want to go away. I have to have more than the normal cycle of treatment. I hate it.
But I do not want to feel sorry for myself. I don't want to talk about how small those rooms are, or how much better I'd feel if that refrigerator were shiny, silvery and contemporary. I want to talk about what I'm going to eat when I get to Quebec next August and watch Scott in the Ironman competition--so far, poutine is on the menu. What else should I hope to have?
Thursday, October 10, 2013
Pure (Cancer) Reality
Last week, a round of chemo and this week, an hour of Erbitux. The tumors on my chest under some better control, perhaps smaller--the nodules under my arms sot so prominent. These are signs of progress, slow perhaps, but progress.
The problem, I'm finding out, is that this progress comes against a mountain of cancer spreading throughout my system, hitchhiking in the lymph system to points unknown. The disease is progressing even as I am, and my prognosis is guarded.
This first came up a couple of weeks ago when I had a consultation with an outside ENT surgeon, looking into a wound that has opened on my neck--and in his estimation, surgery was a waste of time as I had a matter of months to live. Months I thought? Months?
Well, it seems that's not a wholly unsubstantiated prognosis--albeit one that doesn't take into account my progress against its progress, and can't rationalize my state of mind and determination versus the raw destructive power of cancer. This prognosis, depressing as it seems at first to hear, is just a guess in a sea of half-spawned data.
It can't be ignored, though--and to me, an optimism that I have that is uninformed is as stupid as defeating oneself before the race is started. What this prognosis means to me is that I have to cross t's and dot i's and be more aggressive. It means I have to guard my mental state to be strong against the idea that this isn't worth fighting any longer, and that is harder to do than you might imagine.
Back in March, I woke up from surgery certain that they'd gotten the cancer, that I would recover fully, and within months, I'd be back at my favorite burger bar. Months later, I see that growing more distant, but not impossible; it would have to be the edge of an island my raft would aim to achieve, a place I need to be ready to grasp, but not anytime soon.
My deal with Scott when we first heard the shortened timeline was not to share it--and mostly, we haven't--my only experiment in doing so seeming to depress the listener to a degree that alarmed me and brought a dinner at our apartment to a screeching end.
Prognosis is guesswork, and can't possibly accept the variables of me, how well treatment goes, whether I'm chosen for a Phase I trial (this is a possibility), what I make of the news. But prognosis does tell me how difficult it is , how high the incline I'm facing (high), and how much miracle to practicality I need in the mix (significant).
As a practical person, I want to be ready to live and ready to die at the same moment--I believe that one can't be too far away from the other. I don't know what happens when we die, though I suspect there's another dimension; I suspect when we live past other's expectations of our death, that's rather similar.
My own expectations and my vision shows me as an old guy, hitting 70, eating a Super Duper Burger and enjoying a dessert. That's at least, prognosis or no, what I'm moving toward every day. Yet I will consider a will, and I will be certain I'm telling everyone who matters just why they do. After all, it never hurts, and it's only fair. Call it informed optimism.
The problem, I'm finding out, is that this progress comes against a mountain of cancer spreading throughout my system, hitchhiking in the lymph system to points unknown. The disease is progressing even as I am, and my prognosis is guarded.
This first came up a couple of weeks ago when I had a consultation with an outside ENT surgeon, looking into a wound that has opened on my neck--and in his estimation, surgery was a waste of time as I had a matter of months to live. Months I thought? Months?
Well, it seems that's not a wholly unsubstantiated prognosis--albeit one that doesn't take into account my progress against its progress, and can't rationalize my state of mind and determination versus the raw destructive power of cancer. This prognosis, depressing as it seems at first to hear, is just a guess in a sea of half-spawned data.
It can't be ignored, though--and to me, an optimism that I have that is uninformed is as stupid as defeating oneself before the race is started. What this prognosis means to me is that I have to cross t's and dot i's and be more aggressive. It means I have to guard my mental state to be strong against the idea that this isn't worth fighting any longer, and that is harder to do than you might imagine.
Back in March, I woke up from surgery certain that they'd gotten the cancer, that I would recover fully, and within months, I'd be back at my favorite burger bar. Months later, I see that growing more distant, but not impossible; it would have to be the edge of an island my raft would aim to achieve, a place I need to be ready to grasp, but not anytime soon.
My deal with Scott when we first heard the shortened timeline was not to share it--and mostly, we haven't--my only experiment in doing so seeming to depress the listener to a degree that alarmed me and brought a dinner at our apartment to a screeching end.
Prognosis is guesswork, and can't possibly accept the variables of me, how well treatment goes, whether I'm chosen for a Phase I trial (this is a possibility), what I make of the news. But prognosis does tell me how difficult it is , how high the incline I'm facing (high), and how much miracle to practicality I need in the mix (significant).
As a practical person, I want to be ready to live and ready to die at the same moment--I believe that one can't be too far away from the other. I don't know what happens when we die, though I suspect there's another dimension; I suspect when we live past other's expectations of our death, that's rather similar.
My own expectations and my vision shows me as an old guy, hitting 70, eating a Super Duper Burger and enjoying a dessert. That's at least, prognosis or no, what I'm moving toward every day. Yet I will consider a will, and I will be certain I'm telling everyone who matters just why they do. After all, it never hurts, and it's only fair. Call it informed optimism.
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