A lady came into my office at the end of the day last Friday. Now this lady normally is one of the most upbeat, happy people I know, but just then she seemed on the verge of tears. It turns out earlier in the week she had been diagnosed with cancer. May you never know the gut-wrenching fear that comes with that diagnosis. I had to leave to pick up Robbie from school, but I did have time to ask "What have you got?" She said she had been diagnosed with Smoldering Multiple Myeloma. It was Stage 2. "Stage 2?", I said. "Come back when you have a problem! I've been Stage 4 for three years." I told her a diagnosis is not a death sentence. That you can live and work and exercise and do most of the things you want to do. We talked a little more and she went away a little less scared. She dropped by today and we talked more. She said I had made her weekend a lot better. I gave her some of my perspectives and offered to check with Dr. Cheson to see if he knew of any colleagues who dealt with her condition (I sent that email a few minutes ago). We talked about living with cancer and what different treatment options mean. Sometimes just having someone to talk to, someone who has been down the road you're about to travel, can really help. I like to think I helped Cathy today. It reminds me why I started the blog and why I need to keep it up more regularly.
Since I'll be posting this link to Facebook, let me first thank all of you who routinely post the "repost this if you care" kind of cancer awareness posts. Now I'll gently share this with you: I always smile when I see the ones that say something to the effect of "You may want a new sportscar, or a new vacation home, or tickets on the 50-yard line. I know people who only want one thing--to be cured of cancer. Repost if you agree". I want to--lovingly--let you in on a secret. Most of us with cancer want the new sportscar and new vacation home, too. For most of us cancer survivors (and that's anyone who has cancer and is surviving), we want what everyone else wants. You truly learn to live with--not in spite of--your affliction. So thank you, truly, for the thought. But if someone suggests giving me 50-yard line tickets, don't tell them "That's not what he wants!" I'm that kind of greedy: I want the cure AND the tickets.
Monday, February 13, 2012
Friday, December 30, 2011
The Evening Walk, as improved and documented by technology
During fifteen years perambulating this circuit (and in the preceding decades of walking and musing), I have occasionally pondered the idea of "finding happiness", looking far out into the distance like happiness is a destination to be reached; like it's a gleaming city whose glow can be seen just over the horizon--like Oz. And like Oz, there would be no doubt in your mind when you got there.
It struck me tonight that this image of happiness is undoubtedly wrong and dangerously misleading. The happiness I've always looked for is more likely already all around me, like jewels hidden in the long grass along my path, waiting to be discovered and plucked up. It's ever-so-cliche, but it occurred to me that happiness should be the journey, not the destination. You don't reach happiness--you find it. But to find happiness, you have to be looking for it. And you have to believe you deserve it.
Before every yoga practice, you are encouraged to set an intention for that practice--something you specifically want to focus on during your time on the mat. Because practice can sometimes be challenging, I often set the intention of finding joy in every pose I attempt. I find when I remember my intention I can smile even when my quads are screaming or when I'm falling again and again out of a balancing pose (any balancing pose). I want to bring that concept off the mat and incorporate it more fully into the rest of my life. Maybe that's my first resolution for 2012--find the joy.
It struck me tonight that this image of happiness is undoubtedly wrong and dangerously misleading. The happiness I've always looked for is more likely already all around me, like jewels hidden in the long grass along my path, waiting to be discovered and plucked up. It's ever-so-cliche, but it occurred to me that happiness should be the journey, not the destination. You don't reach happiness--you find it. But to find happiness, you have to be looking for it. And you have to believe you deserve it.
Before every yoga practice, you are encouraged to set an intention for that practice--something you specifically want to focus on during your time on the mat. Because practice can sometimes be challenging, I often set the intention of finding joy in every pose I attempt. I find when I remember my intention I can smile even when my quads are screaming or when I'm falling again and again out of a balancing pose (any balancing pose). I want to bring that concept off the mat and incorporate it more fully into the rest of my life. Maybe that's my first resolution for 2012--find the joy.
Speaking of 2012, the little chime on my Casio G-Shock watch just told me that midnight is now in the rearview mirror, making these the first moments of the last day of 2011. Let the journey continue. Keep your eyes open. Find the joy.
via mobile (then fixed via laptop)
Tuesday, December 20, 2011
Happy Holidays/Georgetown in December
Hi all. Kim B. told me I have to start doing this again, so I will (I'm putty in her hands). I'm constrained, because since I set up the blog, I've also added an @gmail.com account, and since Google has apparently appropriated Blogger, I had a hell of a time figuring out how to get to my blog. I'll fix the mechanics tomorrow.
I went to Georgetown for my second checkup since finishing my last round of chemo. The campus was almost deserted, with just a few students left taking finals. I don't miss finals. My first post-chemo checkup was back in October, two months after the end of the cycle. Second checkup was two months after that (today). Short version of today's checkup (and with a 6:00 a.m. yoga class tomorrow, there will be no long version): my CLL, while not in remission, is still basically dormant. I got three months before my next checkup. So that is good news.
Robbie is out of school for the holidays and turned eight just last Friday. Tomorrow is the second anniversary of Sunshine's departure. We're pretty much staying put for the holidays, but may make a day trip or two. I'll get into more detail and into more metaphysical musing later, but as I said I have a 6:00 am yoga class tomorrow, so that will wait. Just wanted to write this to prove to myself that I still can.
I'll finally be buying a true smartphone next week, so hopefully I'll be able to include more photos in the blog. Don't worry though--I plan to make very few of them of me. Maybe I'll try a video blog (a Vlog?)
Anyway, a very Merry holiday season to you and yours, whether that holiday be Christmas, Chanukah, Kwanzaa, or Festivus. Thank you for reading. If you're new to the blog, check out June 2009--that was when the real excitement happened.
I went to Georgetown for my second checkup since finishing my last round of chemo. The campus was almost deserted, with just a few students left taking finals. I don't miss finals. My first post-chemo checkup was back in October, two months after the end of the cycle. Second checkup was two months after that (today). Short version of today's checkup (and with a 6:00 a.m. yoga class tomorrow, there will be no long version): my CLL, while not in remission, is still basically dormant. I got three months before my next checkup. So that is good news.
Robbie is out of school for the holidays and turned eight just last Friday. Tomorrow is the second anniversary of Sunshine's departure. We're pretty much staying put for the holidays, but may make a day trip or two. I'll get into more detail and into more metaphysical musing later, but as I said I have a 6:00 am yoga class tomorrow, so that will wait. Just wanted to write this to prove to myself that I still can.
I'll finally be buying a true smartphone next week, so hopefully I'll be able to include more photos in the blog. Don't worry though--I plan to make very few of them of me. Maybe I'll try a video blog (a Vlog?)
Anyway, a very Merry holiday season to you and yours, whether that holiday be Christmas, Chanukah, Kwanzaa, or Festivus. Thank you for reading. If you're new to the blog, check out June 2009--that was when the real excitement happened.
Wednesday, July 27, 2011
Round 3, Cycle 6, Day 2
Back at Georgetown for Day 2. I spent a nice evening last night with Jim, Elena and Tayrn, who fed me hamburgers, corn on the cob, potato salad, and beer. We also had champagne courtesy of Tayrn, celebrating a well-deserved, long-overdue pay raise. we stayed up longer than would should have, swapping stories and providing Tayrn the benefit of our age-derived sagacity. Jim didn't have to leave this morning until 6:30, so we got to sleep in a little. Still got my walk in, though. Got my coffee at Saxby's, but got a croissant rather than my usual muffin. I like to mix it up a little.
I do owe Elena an apology: in an earlier post, I implied that Elena sleeps until 10:30 every morning. Let me set the record straight. Elena assures me that she rarely sleeps past 9:30. I stand corrected.
My Bendamustine came early this morning, so it looks like I could be out of here by 10:30 (a full hour after Elena will have risen and shone) or so, which is nice.
My friend Dolly suggested in a comment after yesterday's post that having a port inserted would address my 'burnt vein' issues. For the uninitiated, a port is a device surgically inserted in the upper torso tied into the subclavian vein (Google it) providing easy access to the blood stream. Skin grows over it; the nurses stick the needle right through it. Of the three patients in this room right now, I'm the only one without a port. I don't have one for two reasons: my medical team has said I don't need one and I'd really like to avoid getting one until I really have to. Somehow--and I know it's just mental--I'm weirded out by the prospect of having the hardware installed inside me. I can just imagine waking up in the middle of the night stressing about it. One of the first things my friend Neal did upon finishing treatment for testicular cancer was to have his port removed--he didn't want it in him. I think I'd feel the same. So, again, it may be silly, but until a doc says I need one, I'll put up with burned veins.
Speaking of which, I think I'm feeling the little tell-tale signs that I'm going to lose this one, too. Just a minor tingling/burning sensation that portends another hard vein and accompanying bruising. Maybe I should have gotten a port.
I do owe Elena an apology: in an earlier post, I implied that Elena sleeps until 10:30 every morning. Let me set the record straight. Elena assures me that she rarely sleeps past 9:30. I stand corrected.
My Bendamustine came early this morning, so it looks like I could be out of here by 10:30 (a full hour after Elena will have risen and shone) or so, which is nice.
My friend Dolly suggested in a comment after yesterday's post that having a port inserted would address my 'burnt vein' issues. For the uninitiated, a port is a device surgically inserted in the upper torso tied into the subclavian vein (Google it) providing easy access to the blood stream. Skin grows over it; the nurses stick the needle right through it. Of the three patients in this room right now, I'm the only one without a port. I don't have one for two reasons: my medical team has said I don't need one and I'd really like to avoid getting one until I really have to. Somehow--and I know it's just mental--I'm weirded out by the prospect of having the hardware installed inside me. I can just imagine waking up in the middle of the night stressing about it. One of the first things my friend Neal did upon finishing treatment for testicular cancer was to have his port removed--he didn't want it in him. I think I'd feel the same. So, again, it may be silly, but until a doc says I need one, I'll put up with burned veins.
Speaking of which, I think I'm feeling the little tell-tale signs that I'm going to lose this one, too. Just a minor tingling/burning sensation that portends another hard vein and accompanying bruising. Maybe I should have gotten a port.
Tuesday, July 26, 2011
End of the Trial, Take 3
Well, here we are on the Tuesday of the sixth cycle of the third round of treatment. I'm sitting in treatment room 11 and will be blogging somewhat in real time today.
Today started well enough--I left early (4:45 a.m.) to get ahead of the traffiic and to get a little walking time in at G-Town. Made it to the garage by 6:20.
As I wandered through the campus enroute to Georgetown proper, I was rewarded with a chance encounter with Jack, Georgetown's English Bulldog mascot. He was out with his handler and I must say he is a magnificent Bully. From a distance I wasn't even sure he was a Bulldog; he seemed too big. After asking permission, I petted him. He rewarded me with a snuffle and we went on our respective ways. I hoped it was a good omen.
Got here, got weighed, got internet access, and got stuck. Actually, for the first time ever, I got stuck repeatedly. Jameela--who is very good--made two unsuccessful attempts to get blood out of a vein on the top of my left forearm. Remember how I've told you in the past I never watch the needle go in? Now I remember why. I made the mistake of looking as Jameela was probing around on the second stick, trying to get a return. Although the pain was minimal, the world suddenly got a little wobbly and a cold sweat started pouring from my forehead. It didn't get any better as she switched to a vein on the back of my wrist. It was a very disconcerting feeling. Let's hope it's not a sign of things to come.
Remember last time I told you I was pleased because the vein we had used for infusing had held up? Not so fast. About two weeks ago, as I was showering (and you're welcome for that mental image [my soft soap scrubber is yellow, by the way] ), I noticed discomfort at and around the infusion site. Pretty soon a brown bruise nine inches long and half an inch wide appeared. The next day while we were horsing around, Robbie grabbed and pulled the arm, eliciting an "OW OW OW OW!" from Daddy that he at first thought was part of the game. It still is sore, and I have no reason to expect anything different from this round of treatment.
I've got an appointment with Dr. Cheson in 40 minutes, so I'll post this and add more later. Here we go.
10:55: Back upstairs again. Dr. Cheson is out of town, so I met with the lovely Catherine. We chatted about her incredible 14-month-old son and my incredible 7-year-old son. She then examined me--not much change, all still looks to be in order and on pace--and sent me on my way. I also met with Pari, my trials coordinator, and discovered Liz and I had planned a vacation over the top of my next set of labs. Pari's going to fix it for me. I need another bone marrow biopsy and CT scan to see where we sit, and it is mandatory that Catherine do my biopsy. She is an angel with the needle.
As I type this, I'm also partcipating in a high-level NAVAIR policy discussion on telework. I love electronics.
Still waiting for the drugs to show up, so in the meantime I'll post a recent picture of Robbie.
I need to concentrate on the meeting, so I'll post now.
12:30: Teleconference is over and the Bendamustine is flowing. It wasn't lost on me that I was essentially telecommuting to a meeting about telecommuting. Kinda 'Inception'-like. Still an hour out or so from the Benadryl. Looks like a long day. I anticipate a nap this afternoon.
Just had a thought based on my earlier encounter with Georgetown's Jack: one of the many differences between Georgetown and LSU is that while meeting Jack on stroll through the campus is a treat, running into Mike the Tiger while crossing LSU's quadrangle would be a whole 'nother experience.
1:30 p.m.: BENADRYL TIME! Between the 4:15 a.m. wake-up and the benadryl now flowing into my vein, I don't expect to be conscience very much longer. I toyed with the idea of drinking a bottle of "Five Hour Energy", but recieved medical advice to the contrary. Side note: my head is congested and I was worried about not being able to breathe through my nose as I slept. I thought, "Wonder if I have any bendaryl in my computer bag?" Then I remembered why I was going to be sleeping soon. Duh.
5:30 p.m.: Wow. For all intents and purposes (or 'all intensive purposes', which is how I thought that phrase was said for many year), I just woke up. Don't know if it's the early morning start or a stonger strain of benadryl, but that's the longest it's ever put me down. I wasn't asleep the whole time--I snuck a couple of bathroom breaks in there--but I was out for all practical purposes.
Apparently there's another guy here starting the same trial I'm just now finishing up, and he'd like to talk. I'm going to let the nurses know that I'm open for business again. I'll let you know how that goes.
6:25 p.m.: Just spent twenty minutes or so talking to Jesse, an African-American gentlemen a few years older than me, who is on cycle 1 of the same trial I'm finishing today. He was curious about effects, etc. that I've noticed with this trial. I told him he'd have to read my blog. Not really--I gave him all the relevant info and will be sharing my blog address before I go.
6:30 p.m.: AND, we're done. Didn't get the last 30 mililiters or so of the drug due to technical issues, but I did get at least 1000 ml. We're closing up shop for the night. Sonia cleared the IV lead with the anti-coagulant Heprin, wrapped the site with 16 feet of gauze (roughly), and said good-night. That's my cue to put away all the electronics and head to Jim and Elena's.
You have a great night.
Today started well enough--I left early (4:45 a.m.) to get ahead of the traffiic and to get a little walking time in at G-Town. Made it to the garage by 6:20.
 |
| Jack the Bulldog, doing what Bulldogs do best. |
Got here, got weighed, got internet access, and got stuck. Actually, for the first time ever, I got stuck repeatedly. Jameela--who is very good--made two unsuccessful attempts to get blood out of a vein on the top of my left forearm. Remember how I've told you in the past I never watch the needle go in? Now I remember why. I made the mistake of looking as Jameela was probing around on the second stick, trying to get a return. Although the pain was minimal, the world suddenly got a little wobbly and a cold sweat started pouring from my forehead. It didn't get any better as she switched to a vein on the back of my wrist. It was a very disconcerting feeling. Let's hope it's not a sign of things to come.
Remember last time I told you I was pleased because the vein we had used for infusing had held up? Not so fast. About two weeks ago, as I was showering (and you're welcome for that mental image [my soft soap scrubber is yellow, by the way] ), I noticed discomfort at and around the infusion site. Pretty soon a brown bruise nine inches long and half an inch wide appeared. The next day while we were horsing around, Robbie grabbed and pulled the arm, eliciting an "OW OW OW OW!" from Daddy that he at first thought was part of the game. It still is sore, and I have no reason to expect anything different from this round of treatment.
I've got an appointment with Dr. Cheson in 40 minutes, so I'll post this and add more later. Here we go.
10:55: Back upstairs again. Dr. Cheson is out of town, so I met with the lovely Catherine. We chatted about her incredible 14-month-old son and my incredible 7-year-old son. She then examined me--not much change, all still looks to be in order and on pace--and sent me on my way. I also met with Pari, my trials coordinator, and discovered Liz and I had planned a vacation over the top of my next set of labs. Pari's going to fix it for me. I need another bone marrow biopsy and CT scan to see where we sit, and it is mandatory that Catherine do my biopsy. She is an angel with the needle.
As I type this, I'm also partcipating in a high-level NAVAIR policy discussion on telework. I love electronics.
Still waiting for the drugs to show up, so in the meantime I'll post a recent picture of Robbie.
 |
| Robbie McMichael--Triton |
12:30: Teleconference is over and the Bendamustine is flowing. It wasn't lost on me that I was essentially telecommuting to a meeting about telecommuting. Kinda 'Inception'-like. Still an hour out or so from the Benadryl. Looks like a long day. I anticipate a nap this afternoon.
Just had a thought based on my earlier encounter with Georgetown's Jack: one of the many differences between Georgetown and LSU is that while meeting Jack on stroll through the campus is a treat, running into Mike the Tiger while crossing LSU's quadrangle would be a whole 'nother experience.
1:30 p.m.: BENADRYL TIME! Between the 4:15 a.m. wake-up and the benadryl now flowing into my vein, I don't expect to be conscience very much longer. I toyed with the idea of drinking a bottle of "Five Hour Energy", but recieved medical advice to the contrary. Side note: my head is congested and I was worried about not being able to breathe through my nose as I slept. I thought, "Wonder if I have any bendaryl in my computer bag?" Then I remembered why I was going to be sleeping soon. Duh.
5:30 p.m.: Wow. For all intents and purposes (or 'all intensive purposes', which is how I thought that phrase was said for many year), I just woke up. Don't know if it's the early morning start or a stonger strain of benadryl, but that's the longest it's ever put me down. I wasn't asleep the whole time--I snuck a couple of bathroom breaks in there--but I was out for all practical purposes.
Apparently there's another guy here starting the same trial I'm just now finishing up, and he'd like to talk. I'm going to let the nurses know that I'm open for business again. I'll let you know how that goes.
6:25 p.m.: Just spent twenty minutes or so talking to Jesse, an African-American gentlemen a few years older than me, who is on cycle 1 of the same trial I'm finishing today. He was curious about effects, etc. that I've noticed with this trial. I told him he'd have to read my blog. Not really--I gave him all the relevant info and will be sharing my blog address before I go.
6:30 p.m.: AND, we're done. Didn't get the last 30 mililiters or so of the drug due to technical issues, but I did get at least 1000 ml. We're closing up shop for the night. Sonia cleared the IV lead with the anti-coagulant Heprin, wrapped the site with 16 feet of gauze (roughly), and said good-night. That's my cue to put away all the electronics and head to Jim and Elena's.
You have a great night.
Tuesday, July 5, 2011
Sven and Ole Go to the Beach
As promised, "Sven and Ole [pronounced: Oh-lee] Go to the Beach". (for max comedic effect, please read with a bad Norwegian accent)
Sven and Ole went to da beach one day. Sven, he spread his beach towel out and started puttin' on de SPF 45. Ole had different ideas.
"Hey Sven, I'm gonna wear dis Speedo svimsuit up and down da beach and meet some gurls!"
After about tventy or so minutes, Ole came back lookin' kinda sad.
"Sven, de gurls von't even look at me. How'm I supposed ta talk to dem?"
Sven said, "Ole, if you vant to impress dem gurls, you should put a potato in your Speedo."
Ole thought that was a great idea and put it into action. He grabbed a big potato from their lunch basket, put it in his Speedo, and headed down da beach.
After a few minutes, he came back.
"Sven, now all dem gurls is all laughing at me!"
"Ole. You're supposed to put da potato in the front of your suit."
_________________
OK, there was the promised joke. Hope you like it as much as I do (I love that joke). So far all is still well with me. I seem to have tolerated the chemo better this time, although on Sunday I was hit with a big hunk of low energy. All seemed better yesterday and my going-on-two-month head/chest cold seems to be clearing up.
As I mentioned last post, between the cold and the bad wrist, I had gotten out of a lot of good habits and substituted several bad ones. I've resolved to get back to the good habits and as down payment got up this morning at 5:15, did 30 minutes of yoga in the living room, followed by 10 minutes of meditation. That's one in a row. Let's see if I can keep this streak alive. I'll keep you informed.
Sven and Ole went to da beach one day. Sven, he spread his beach towel out and started puttin' on de SPF 45. Ole had different ideas.
"Hey Sven, I'm gonna wear dis Speedo svimsuit up and down da beach and meet some gurls!"
After about tventy or so minutes, Ole came back lookin' kinda sad.
"Sven, de gurls von't even look at me. How'm I supposed ta talk to dem?"
Sven said, "Ole, if you vant to impress dem gurls, you should put a potato in your Speedo."
Ole thought that was a great idea and put it into action. He grabbed a big potato from their lunch basket, put it in his Speedo, and headed down da beach.
After a few minutes, he came back.
"Sven, now all dem gurls is all laughing at me!"
"Ole. You're supposed to put da potato in the front of your suit."
_________________
OK, there was the promised joke. Hope you like it as much as I do (I love that joke). So far all is still well with me. I seem to have tolerated the chemo better this time, although on Sunday I was hit with a big hunk of low energy. All seemed better yesterday and my going-on-two-month head/chest cold seems to be clearing up.
As I mentioned last post, between the cold and the bad wrist, I had gotten out of a lot of good habits and substituted several bad ones. I've resolved to get back to the good habits and as down payment got up this morning at 5:15, did 30 minutes of yoga in the living room, followed by 10 minutes of meditation. That's one in a row. Let's see if I can keep this streak alive. I'll keep you informed.
Wednesday, June 29, 2011
Hey Everybody! Remember Me?
I love to walk. And I'll say more about that after my abject apology served with a little whine.
First let me assure you that everything is humming along smoothly.
My apologies to my dedicated followers for not being a more dedicated blogger. No good excuse, so I'll use a bad one instead. The chemo I'm getting--the Ofatumamab and the Bendamustine--is a bit more of an ass kicker than the stuff I got first time around. Combine that with the growth factor shot and by the time the weekend rolls around I have energy for about one task a day. Liz has worked hard to keep her travel in check, but it's just happened that the last three times I was coming out of treatment, she had to go to Seattle. She had to leave on the Wednesday afternoon I was finishing infusion and before my two-hour Thursday drive to get my growth factor shot. By the time I got Robbie from school, got him to swim practice, got him fed, got him bathed and got him to bed, I didn't have the poop to write anything. By Thursday night, the chemo really kicks in and I'm fairly in a fog for the next four of five days (lot of f's back there). That's was usually when I would blog. Now that sounds like a great excuse, but my energy level is back up after a week or so, so why didn't I blog then? Lazy. Out of the habit. Out of guilt for having not blogged. It's a bad cycle.
I have a pattern that repeats anytime I fall behind in communication with a friend: I feel guilty about it, which somehow makes it even harder to go back, which adds more time, which adds more guilt, etc. etc. I finally got enough gentle anonymous pokes (Eggy-Pay and Im-Kay) and reminders from other friends that this isn't just my blog. So I'm getting off my ass and writing again.
And I'm finding, as I usually do when I get back to the blog after being away, that the hardest part is starting. After that it kinda flows. And isn't that the true of so many good things?
Anyway, today was the second day of Round 5 of my chemo. One more round to go. As I said earlier, there are differences from the first round of chemo. I feel more tired for the week or so afterward. This stuff is also harder on my veins. In five sessions, I've burnt out two veins, one of which kind of blew out when the nurse was injecting an anti-coagulant after my previous Tuesday session. When she pushed in the plunger a little too vigorously, it felt as if someone had put out cigarette on my arm at the point where the line entered the vein. (OK, that's a little hyperbole, but it did hurt enough to make me jump.) The next day I had a bruise around the site. Yesterday and today, at my urging, she was much more gentle, and it appears we saved the vein.
I posted two pictures earlier today. My Facebook friends may have understood the one with the barriers and chains.
Yep, that lower yellow chain (which was the only thing in that gap two months ago) was the one I tripped over two months ago and absolutely busted my butt. More to the point, I took all the skin off the outer three knuckles on my right hand (while saving the iPad held in said hand) and sprained my left wrist slapping out the fall. The wrist still hurts. I like to think the new barrier system is there in my honor. And no, I didn't think about suing the hospital. One, I don't sue people for my own inattention and stupidity, and Two, I kinda want them to continue to treat my CLL. Seems counterproductive to piss them off in court.
But back to my opening sentance: I love to walk. Even back in my early Navy days in Pensacola, just after the invention of manned flight, I loved to go for long walks on the base. I later lived for ten years in and around Haddonfield, New Jersey, a town that easily could have been Norman Rockwell's inspiration. Until recently Haddonfield was at the top of my "Favorite Places to Walk" list. Now Georgetown has taken that crown.
One of the true pleasures I've discovered as part of this adventure is how beautiful Georgetown can be. As you know, I stay Tuesday nights with my friends Jim and Elena. Jim leaves at 5:45 for work and I generally leave with him. It's either that or wait until 10:30 for Elena to wake up (love you, Elena). Anyway, at that time of day, it takes me all of 20 minutes to get to Georgetown. I'm usually in the parking garage by 6:15. The Trials area on the 7th floor doesn't open until 8:00, so this gives me almost two hours to indulge my wanderlust.
This morning was absolutely perfect for walking. A front had moved through during the night, leaving the morning cool, breezy, and refreshingly lacking in humidity. My usual drive crosses the Francis Scott Key bridge (see above) between Rosslyn, Virginia and Washington, D.C. In good weather, the pedestrial lanes flanking the traffic lanes are always full of runners, bikers, and walkers. On a whim, I decided to join them today. So across the campus, down the Exorcist steps (see one of my early entries) and across the bridge. It was as great as I had hoped it would be. Looking out over the Anacostia river I could see several boats from the nearby boathouses conducting early morning workouts. Everything from single-person sculls to two-person to four-person and on up to eight-person boats. It was around 7:00 when I made the return leg, by which time the runners started coming across.
The other picture is from the path cart along the canal that parallels the river.
People shop on the main drag of Georgetown just one block away and never know this path and canal exist. It was incredible. I walked for just about two hours.
No matter where my peregrinations might take me on a given Wednesday morning, I invariably end up at Saxby's Coffee at 3500 O Street, about three blocks from campus. I always have a muffin and a large coffee, and sit by the large bay window to soak in the scene outside.
It has such a quaint and "been there forever" feel, I was really suprised to find out that Saxby's is part of a nationwide chain. I highly recommend it to anyone visiting the area.
You may have noted that with the exception of a paragraph or two up front, I haven't spent much time talking about the CLL and the treatment. I guess it's part of the whole "living with cancer" thing. Before I was diagnosed, that phrase always conjured up an image of a person locked in a cage with a beast, learning to live despite their companion. But that's not it--that would be "living despite cancer". Living with cancer--particularly when you are 'blessed' to have one of the milder variants like I have--means it's just one more thing in your life. When I first started this blog, it was the big scary Gorilla in the Room. I didn't know what to expect and I was quite frankly terrified. Now it's the devil I know. Maybe it's perspective. Maybe it's desensitation. In any case, I fret more about the time the treatments take than I do the condition they are treating. I recognize that makes me lucky.
Met a great guy named Paul in the the common treatment room today. He has a variant of adnoid cancer (adnoid cancer? sounds kind of boutique to me) that manifested itself in his left lung seven years ago. That was when they removed his lung. When they start removing lungs, now you've got some day-to-day impact. He said he's had to slow down. He can't run or ski anymore. But he's still here. He has a couple of flare up spots they are treating in his trial, and he gets to wear a 'chemo fanny pack' for two days to get his infusion. Last time his hair fell out. As I've said, everytime I go to the 7th floor, I find out how lucky I've been.
Two last things, one happy one sad: my buddy Brad's wife Patrice has come through treatments that boggle the mind over the last several months, and now the doctors are cautiously optimistic that they've gotten all the cancer out of her mouth and throat. On the sad side, as I was finishing my treatment today on the 7th floor of the Main Building, a co-worker's family was making one of life's hardest decisions nearby. On the 4th floor of the Intensive Care building (where I spent time two years ago), they gave the order to cease the heroic measures keeping her father-in-law alive. At least I was able to show them where they could get a decent meal near the hospital. My prayers are with my friend, her husband, and their family. [note: as I was finishing this entry, I learned in a text that my friend's father-in-law passed away this evening. May he be at peace.]
I will try and get back to the same posting rate I did before. I'm also resolving to get back on my yoga mat, which has gathered quite a bit of dust since I sprained my wrist (and got strep throat, but I've already exceeded my whining limit). So, to the good friends who lovingly prodded me to get back to the keyboard, thank you and please keep prodding.
As this post was somewhat dark, next time I'll start with the joke about Ole and Sven at the beach.
First let me assure you that everything is humming along smoothly.
My apologies to my dedicated followers for not being a more dedicated blogger. No good excuse, so I'll use a bad one instead. The chemo I'm getting--the Ofatumamab and the Bendamustine--is a bit more of an ass kicker than the stuff I got first time around. Combine that with the growth factor shot and by the time the weekend rolls around I have energy for about one task a day. Liz has worked hard to keep her travel in check, but it's just happened that the last three times I was coming out of treatment, she had to go to Seattle. She had to leave on the Wednesday afternoon I was finishing infusion and before my two-hour Thursday drive to get my growth factor shot. By the time I got Robbie from school, got him to swim practice, got him fed, got him bathed and got him to bed, I didn't have the poop to write anything. By Thursday night, the chemo really kicks in and I'm fairly in a fog for the next four of five days (lot of f's back there). That's was usually when I would blog. Now that sounds like a great excuse, but my energy level is back up after a week or so, so why didn't I blog then? Lazy. Out of the habit. Out of guilt for having not blogged. It's a bad cycle.
I have a pattern that repeats anytime I fall behind in communication with a friend: I feel guilty about it, which somehow makes it even harder to go back, which adds more time, which adds more guilt, etc. etc. I finally got enough gentle anonymous pokes (Eggy-Pay and Im-Kay) and reminders from other friends that this isn't just my blog. So I'm getting off my ass and writing again.
And I'm finding, as I usually do when I get back to the blog after being away, that the hardest part is starting. After that it kinda flows. And isn't that the true of so many good things?
Anyway, today was the second day of Round 5 of my chemo. One more round to go. As I said earlier, there are differences from the first round of chemo. I feel more tired for the week or so afterward. This stuff is also harder on my veins. In five sessions, I've burnt out two veins, one of which kind of blew out when the nurse was injecting an anti-coagulant after my previous Tuesday session. When she pushed in the plunger a little too vigorously, it felt as if someone had put out cigarette on my arm at the point where the line entered the vein. (OK, that's a little hyperbole, but it did hurt enough to make me jump.) The next day I had a bruise around the site. Yesterday and today, at my urging, she was much more gentle, and it appears we saved the vein.
I posted two pictures earlier today. My Facebook friends may have understood the one with the barriers and chains.
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| Georgetown Moron Trap. Red paint, barrier, and second chain recently added. |
Yep, that lower yellow chain (which was the only thing in that gap two months ago) was the one I tripped over two months ago and absolutely busted my butt. More to the point, I took all the skin off the outer three knuckles on my right hand (while saving the iPad held in said hand) and sprained my left wrist slapping out the fall. The wrist still hurts. I like to think the new barrier system is there in my honor. And no, I didn't think about suing the hospital. One, I don't sue people for my own inattention and stupidity, and Two, I kinda want them to continue to treat my CLL. Seems counterproductive to piss them off in court.
But back to my opening sentance: I love to walk. Even back in my early Navy days in Pensacola, just after the invention of manned flight, I loved to go for long walks on the base. I later lived for ten years in and around Haddonfield, New Jersey, a town that easily could have been Norman Rockwell's inspiration. Until recently Haddonfield was at the top of my "Favorite Places to Walk" list. Now Georgetown has taken that crown.
One of the true pleasures I've discovered as part of this adventure is how beautiful Georgetown can be. As you know, I stay Tuesday nights with my friends Jim and Elena. Jim leaves at 5:45 for work and I generally leave with him. It's either that or wait until 10:30 for Elena to wake up (love you, Elena). Anyway, at that time of day, it takes me all of 20 minutes to get to Georgetown. I'm usually in the parking garage by 6:15. The Trials area on the 7th floor doesn't open until 8:00, so this gives me almost two hours to indulge my wanderlust.
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| Francis Scott Key Bridge (I didn't take this) |
The other picture is from the path cart along the canal that parallels the river.
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| Georgetown Canal Path (I did take this) |
People shop on the main drag of Georgetown just one block away and never know this path and canal exist. It was incredible. I walked for just about two hours.
No matter where my peregrinations might take me on a given Wednesday morning, I invariably end up at Saxby's Coffee at 3500 O Street, about three blocks from campus. I always have a muffin and a large coffee, and sit by the large bay window to soak in the scene outside.
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| Saxby's |
You may have noted that with the exception of a paragraph or two up front, I haven't spent much time talking about the CLL and the treatment. I guess it's part of the whole "living with cancer" thing. Before I was diagnosed, that phrase always conjured up an image of a person locked in a cage with a beast, learning to live despite their companion. But that's not it--that would be "living despite cancer". Living with cancer--particularly when you are 'blessed' to have one of the milder variants like I have--means it's just one more thing in your life. When I first started this blog, it was the big scary Gorilla in the Room. I didn't know what to expect and I was quite frankly terrified. Now it's the devil I know. Maybe it's perspective. Maybe it's desensitation. In any case, I fret more about the time the treatments take than I do the condition they are treating. I recognize that makes me lucky.
Met a great guy named Paul in the the common treatment room today. He has a variant of adnoid cancer (adnoid cancer? sounds kind of boutique to me) that manifested itself in his left lung seven years ago. That was when they removed his lung. When they start removing lungs, now you've got some day-to-day impact. He said he's had to slow down. He can't run or ski anymore. But he's still here. He has a couple of flare up spots they are treating in his trial, and he gets to wear a 'chemo fanny pack' for two days to get his infusion. Last time his hair fell out. As I've said, everytime I go to the 7th floor, I find out how lucky I've been.
Two last things, one happy one sad: my buddy Brad's wife Patrice has come through treatments that boggle the mind over the last several months, and now the doctors are cautiously optimistic that they've gotten all the cancer out of her mouth and throat. On the sad side, as I was finishing my treatment today on the 7th floor of the Main Building, a co-worker's family was making one of life's hardest decisions nearby. On the 4th floor of the Intensive Care building (where I spent time two years ago), they gave the order to cease the heroic measures keeping her father-in-law alive. At least I was able to show them where they could get a decent meal near the hospital. My prayers are with my friend, her husband, and their family. [note: as I was finishing this entry, I learned in a text that my friend's father-in-law passed away this evening. May he be at peace.]
I will try and get back to the same posting rate I did before. I'm also resolving to get back on my yoga mat, which has gathered quite a bit of dust since I sprained my wrist (and got strep throat, but I've already exceeded my whining limit). So, to the good friends who lovingly prodded me to get back to the keyboard, thank you and please keep prodding.
As this post was somewhat dark, next time I'll start with the joke about Ole and Sven at the beach.
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