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Friday, July 24, 2009
Monday, July 20, 2009
Sunday, July 19, 2009
Memories of Last Month
.
Hi all! Well, I start chemo again tomorrow, so it's once more into the breach, dear friends. I'm a little wiser than I was before all this excitement. Starting the week after chemo and for the week after that, I'm going to pretend that I don't have a single white blood cell in my body. I will take all the precautions, do all the washing, take my temperature about every two hours, and hope for the best. I will be helped by the fact that they will be giving me what are known as growth factors which will help my body produce more red and white blood cells.
I also thought (hoped) it might be interesting to get my perspective and memories of ICU and hospital life in general. Rather than try to capture it all at once, I thought I would add a memory each day to lure you back here. Let me say that I have almost no memory of my time at St. Mary's hospital. I remember getting there, I remember them declaring me neutropenic (extremely low in white blood cells), and I remember parts of the ambulance ride to Georgetown. I had no idea I had spent the night there and still have no memory of it.
The first week and a half a Georgetown is gone. They doped me up pretty extensively, plus it appears that the blood flow to my brain was inadvertently reduced when they put the lines in place for my first session of dialysis. Once that was fixed, my recovery was almost exponential. It was during that recovery that I began to regain, if not conciousness, then at least lucidity. Now remember, I'm saying lucidity, but I was still fabulously loopy.
My first memory is "waking up" lying on my side, looking at an odd machine, and listening as a lady in the room was getting all excited because of the LED on the machine that read "400". I didn't know why this was exciting, nor did I care. I just wanted to get up. As I started to put my plan into action, I suddenly heard my brother Wilson's voice behind me, "Tim, you have to lay down." I had no idea why Wilson was there, but if he said lie down, I was lying down. Without Wilson, it probably would have taken a couple of nurses and a return to the wrist straps to keep me in place. We went through the "don't get up" drill several more times during the dialysis session, but I like to think I always listened. Wilson saved me a lot of pain.
Let me give you an indication of just how loopy I was: Once I was aware enough to talk, the doctors would periodically ask me three questions. "What's your name?" "What year is it?" "Where are you?" I was always good with my name, I could never remember if it was 2009 or 2010, but for some reason I became convinced (and told several doctors over a two day span) that I was in a refrigerator house somewhere near the Arctic Circle. And I believed it. Slowly, reality seeped back in, but that's where my head was. (As an aside, you should know that earlier in my career, I had the opportunity to spend three weeks in a "refrigerator house" in beautiful Thule, Greenland--about 400 miles north of the Arctic Circle. It was actually more of a "reverse freezer", keeping the warm in and the cold out. So this wasn't completely divorced from reality.)
More later in the week, with my insights into some pictures that you've already seen.
Have a great week.
Hi all! Well, I start chemo again tomorrow, so it's once more into the breach, dear friends. I'm a little wiser than I was before all this excitement. Starting the week after chemo and for the week after that, I'm going to pretend that I don't have a single white blood cell in my body. I will take all the precautions, do all the washing, take my temperature about every two hours, and hope for the best. I will be helped by the fact that they will be giving me what are known as growth factors which will help my body produce more red and white blood cells.
I also thought (hoped) it might be interesting to get my perspective and memories of ICU and hospital life in general. Rather than try to capture it all at once, I thought I would add a memory each day to lure you back here. Let me say that I have almost no memory of my time at St. Mary's hospital. I remember getting there, I remember them declaring me neutropenic (extremely low in white blood cells), and I remember parts of the ambulance ride to Georgetown. I had no idea I had spent the night there and still have no memory of it.
The first week and a half a Georgetown is gone. They doped me up pretty extensively, plus it appears that the blood flow to my brain was inadvertently reduced when they put the lines in place for my first session of dialysis. Once that was fixed, my recovery was almost exponential. It was during that recovery that I began to regain, if not conciousness, then at least lucidity. Now remember, I'm saying lucidity, but I was still fabulously loopy.
My first memory is "waking up" lying on my side, looking at an odd machine, and listening as a lady in the room was getting all excited because of the LED on the machine that read "400". I didn't know why this was exciting, nor did I care. I just wanted to get up. As I started to put my plan into action, I suddenly heard my brother Wilson's voice behind me, "Tim, you have to lay down." I had no idea why Wilson was there, but if he said lie down, I was lying down. Without Wilson, it probably would have taken a couple of nurses and a return to the wrist straps to keep me in place. We went through the "don't get up" drill several more times during the dialysis session, but I like to think I always listened. Wilson saved me a lot of pain.
Let me give you an indication of just how loopy I was: Once I was aware enough to talk, the doctors would periodically ask me three questions. "What's your name?" "What year is it?" "Where are you?" I was always good with my name, I could never remember if it was 2009 or 2010, but for some reason I became convinced (and told several doctors over a two day span) that I was in a refrigerator house somewhere near the Arctic Circle. And I believed it. Slowly, reality seeped back in, but that's where my head was. (As an aside, you should know that earlier in my career, I had the opportunity to spend three weeks in a "refrigerator house" in beautiful Thule, Greenland--about 400 miles north of the Arctic Circle. It was actually more of a "reverse freezer", keeping the warm in and the cold out. So this wasn't completely divorced from reality.)
More later in the week, with my insights into some pictures that you've already seen.
Have a great week.
Wednesday, July 15, 2009
Quick Update
Real quick update for you, more narrative to follow tomorrow (I promise).
Results from the CT scan came back. Lymph nodes are all shrinking appreciably, so we're going to do another round of Rituxin and Fludarabine next week. This time I will get the Fludarabine for four vice five days, and will be getting a shot at the end of next week that will encourage white and red blood cell production. I'm still going to treat the following week as if I've had a white blood cell crash, and take all the precautions I would take in that case.
Creatinine levels (indicative of kidney health) are down to 1.5, which is in the normal range. Blood pressure is still a little elevated due to the kidney issues I've gone through, but not so high as to need medication. We're taking a wait and watch approach.
Weight is still steady at around 194, about 16 lbs lower than when I went into the hospital. I do not recommend this as a weight loss regime.
I have some good narrative and pictures from Monday's trip that I'll share tomorrow.
Results from the CT scan came back. Lymph nodes are all shrinking appreciably, so we're going to do another round of Rituxin and Fludarabine next week. This time I will get the Fludarabine for four vice five days, and will be getting a shot at the end of next week that will encourage white and red blood cell production. I'm still going to treat the following week as if I've had a white blood cell crash, and take all the precautions I would take in that case.
Creatinine levels (indicative of kidney health) are down to 1.5, which is in the normal range. Blood pressure is still a little elevated due to the kidney issues I've gone through, but not so high as to need medication. We're taking a wait and watch approach.
Weight is still steady at around 194, about 16 lbs lower than when I went into the hospital. I do not recommend this as a weight loss regime.
I have some good narrative and pictures from Monday's trip that I'll share tomorrow.
Sunday, July 12, 2009
New Addition to the Family
No, not that...please. While I haven't mentioned it, our air conditioner has been dead for about the last four months. Having grown up in South Louisiana without central air for most of my young life, I was reminded of how much I hate not having it. At least then, I didn't know what I was missing. Not that Maryland in June approached the sauna in which we were raised. Even on hot days, the inside temp here never got much above 83, but the humidity was terrible. In Louisiana, we used to say, "It's not the heat, it's the humidity." (I'm sorry, that's Phoenix--in Louisiana it was the heat AND the humidity.) Now that we're looking August in the eye, we decided our hand was forced. One credit card later and the good folks from our favorite HVAC company (for the locals, it starts with a "T") came out yesterday and put in our new unit. The happiest of us all is Sunshine, who missed her magic vents in the floor where the cool air came out (see picture to the left).
Other summer items: "Hey Tim," you say, "Considering that brushing your teeth was a major physical effort just two weeks ago, how the heck are you mowing the yard?" To quote Paul and John, "I get by with a little help from my friends." Or more specifically, Jack S., who has come by twice on his riding mower (which I'm coveting) to mow the lawn. There is a trap into which I refuse to fall: If you do something for someone once, they'll be grateful; if you do it for them twice, they'll expect it as a natural right." I vow here never to take for granted or be less grateful to Jack.
Tomorrow, I head up to Georgetown for a full body scan, which I will discuss with Dr. Cheson on Wednesday. Probably not a lot to report until then, but I will be going up to ICU to see if they have a toy Robbie may have left behind. I'll try and capture my impressions returning to the scene.
All for now. Have a great week.
Wednesday, July 8, 2009
Random Thoughts, Little Victories and Little Blessings
.
Here are a few thoughts that have to occurred to me over couple of days.
Not that I'm complaining, but I'm feeling a little rooked. As I may have said before, I have no memory of my first week at Georgetown past my arrival in the cement mixer--I mean ambulance. But from reading Liz's blog entries and listening to the stories of those whose were there, I probably had a near-death experience. I'm a little miffed, because I DON'T REMEMBER ANY OF IT!! Elena tells me I was looking at people in the room she couldn't see. My heart function was down to 15%. I might have seen it all--the light, the tunnel, Teddy Roosevelt (well maybe). But thanks to the medications I don't remember a thing. And I don't want to get this close again for a long, long time.
Little Blessing: As previously reported, Liz was on travel this week, making it "Guys' Week". On Wednesday night, I had the pleasure of watching the Robster eat his first taco. There's a decent Mexican restaurant nearby and Robbie was feeling adventurous enough to try his first dishes from south of the border. He got the "taco, rice, and beans" plate and a virgin strawberry daiquiri. Verdict? The appetizer chips were good, the taco was "good but messy", and the beans were adequate. The rice was hands down his favorite. Afterwards we went down to the waterfront where I answered his machine-gun-paced questions. I've learned that there's no need to put a lot of effort into my answer, because the next question will be asked before I get an answer out anyway.
Little Victory: Next time you go up the stairs, notice your feet. Before going in the hospital, I ran up stairs on the balls of my feet. In fact, the balls of my feet were the only thing that touched the stairs. The first week I was home, you would have thought I was following a Sherpa up the Hillary Step on the last push to the summit of Everest. Each foot--the whole foot--firmly on the step, most of my weight on the forearm resting on the banister, stopping halfway up to catch my breath. Now I find myself back on the balls of my feet. Little victories.
Some people (including my doctor) don't understand how I could have survived with only 15% heart functionality. While it's easy to guess that, as a civil servant and a supervisor, I only use that much of my heart anyway, the real answer is a little more complicated. Actually, at the moment when my heart function was at its lowest, I had a moment of lucidity during which I made myself believe, with all my heart, that I had just decided to return all the Christmas presents and decorations to the Whos in Whoville, and my heart grew three sizes that day. That returned me to 45% functionality and the rest is history.
Still not expecting sypathy, but still having the damnedest time keeping weight on. This is like bulimia, but without the acid-etched teeth. I am absolutely looking forward to going back to a normal diet.
I'm also crafting a "baby steps" yoga program to start gently adding some tone and strength to my upper body. If anyone makes the mistake of showing any interest, I'll write it out for you. You've been warned.
Glad to say there's no medical update. Temp has been fine, I'm feeling fine if occasionally tired, so no complaints. I'll do my best to keep it that way.
Bless you all,
Tim
P.S. My brother-in-law Buster, he of the quadruple bypass, has been up and walking around for about a week. Still hasn't mowed the lawn, though (lazy bum). ;o)
Here are a few thoughts that have to occurred to me over couple of days.
Not that I'm complaining, but I'm feeling a little rooked. As I may have said before, I have no memory of my first week at Georgetown past my arrival in the cement mixer--I mean ambulance. But from reading Liz's blog entries and listening to the stories of those whose were there, I probably had a near-death experience. I'm a little miffed, because I DON'T REMEMBER ANY OF IT!! Elena tells me I was looking at people in the room she couldn't see. My heart function was down to 15%. I might have seen it all--the light, the tunnel, Teddy Roosevelt (well maybe). But thanks to the medications I don't remember a thing. And I don't want to get this close again for a long, long time.
Little Blessing: As previously reported, Liz was on travel this week, making it "Guys' Week". On Wednesday night, I had the pleasure of watching the Robster eat his first taco. There's a decent Mexican restaurant nearby and Robbie was feeling adventurous enough to try his first dishes from south of the border. He got the "taco, rice, and beans" plate and a virgin strawberry daiquiri. Verdict? The appetizer chips were good, the taco was "good but messy", and the beans were adequate. The rice was hands down his favorite. Afterwards we went down to the waterfront where I answered his machine-gun-paced questions. I've learned that there's no need to put a lot of effort into my answer, because the next question will be asked before I get an answer out anyway.
Little Victory: Next time you go up the stairs, notice your feet. Before going in the hospital, I ran up stairs on the balls of my feet. In fact, the balls of my feet were the only thing that touched the stairs. The first week I was home, you would have thought I was following a Sherpa up the Hillary Step on the last push to the summit of Everest. Each foot--the whole foot--firmly on the step, most of my weight on the forearm resting on the banister, stopping halfway up to catch my breath. Now I find myself back on the balls of my feet. Little victories.
Some people (including my doctor) don't understand how I could have survived with only 15% heart functionality. While it's easy to guess that, as a civil servant and a supervisor, I only use that much of my heart anyway, the real answer is a little more complicated. Actually, at the moment when my heart function was at its lowest, I had a moment of lucidity during which I made myself believe, with all my heart, that I had just decided to return all the Christmas presents and decorations to the Whos in Whoville, and my heart grew three sizes that day. That returned me to 45% functionality and the rest is history.
Still not expecting sypathy, but still having the damnedest time keeping weight on. This is like bulimia, but without the acid-etched teeth. I am absolutely looking forward to going back to a normal diet.
I'm also crafting a "baby steps" yoga program to start gently adding some tone and strength to my upper body. If anyone makes the mistake of showing any interest, I'll write it out for you. You've been warned.
Glad to say there's no medical update. Temp has been fine, I'm feeling fine if occasionally tired, so no complaints. I'll do my best to keep it that way.
Bless you all,
Tim
P.S. My brother-in-law Buster, he of the quadruple bypass, has been up and walking around for about a week. Still hasn't mowed the lawn, though (lazy bum). ;o)
Tuesday, July 7, 2009
Tim's Wild Weekend and Creatinine Update
It's been a busy several days, but I didn't realize it had been almost a week since I last posted. My apologies to those of you who have been so faithful in your reading. I'll try not to leave you hanging again.
Before I begin, two things I thought I’d never say: 1) “I really need to gain weight.” and 2) “I am so sick of eating.” I’ve eaten food over the last two weeks that would have put 15 lbs on me five months ago, and now I’ve gained 1. There is no justice. [pause for expressions of sympathy and understanding]
I've got news, medical and social/family. First social.
To all who are wondering, I'm feeling better and better every day. I am much more mobile, and while I still get tired, it's much better than even a week ago. So much so that I'm allowing myself one "adventure" a day. These mostly involve going somewhere and sitting down to watch something (I've changed my definition of "adventure").
Liz and Robbie left Friday for her family's annual reunion in New Jersey. I really would have love to have gone, but I could tell the travel and party were still outside my limits. After seeing them off, I accepted the offer of my friend Robin, who took me--along with her family--the an orchestra performance at the local college, complete with an incredible jazz singer (Hilary Cole--look her up in iTunes) and a fireworks display at the end that exploded overhead while the orchestra played "The 1812 Overture". It was great. At intermission I ran into my friends Alan and Nancy, who invited me over for dinner the evening of July 4th. They were going afterward to their next door neighbors', mutual friends Chuck and Jenny. Chuck later made the invitation official.
Wonderful dinner of BBQed shrimp and grilled vegetables followed by a great fireworks show. Chuck's backyard had a incredible view of the festivities without the usual parking problems. Also saw many other friends at Chuck's who were suprisingly happy to see me (hmm, I don't think I owe them money). Thanks to everyone for a fabulous Friday and 4th.
I went to church on Sunday and received an embarrassing, heartfelt "welcome back". Went into work to say "hi" yesterday for an hour or so, and again today to see a friend graduate from a development program on base. Other than that, I veg.
On Monday, Liz left for a trip. My sister-in-law Jennifer was standing by to come up and help with the Robster. After some thought, I told her that I would go it alone. I'm feeling better and I thought it would be less disruptive for Robbie to have just the two of us in the house. It has worked out like a dream. He has been (with some small exceptions) an angel.
OK, medical news: had a blood test yesterday. Now a little background: each of you, as you sit there, are producing through your kidneys a chemical called creatinine. The normal range of creatinine is 0.5 to 1.5 (units unknown). Anything higher is a sign of reduced kidney function. While I was in the hospital, my creatinine levels were 56782. OK, not that high, but high. When they released me, my levels were at 5. Last Monday, I was at 2. I had an unreasoning fear this week it would be higher again. No fear—I am at 1.6, meaning nearly normal kidney function. I’m not out of the woods, but it’s mostly scrub around my knees these days.
Thanks so much for your continued interest and support. Really, thank you.
Tim
P.S. Happy Anniversary to Cristina and KC.
Before I begin, two things I thought I’d never say: 1) “I really need to gain weight.” and 2) “I am so sick of eating.” I’ve eaten food over the last two weeks that would have put 15 lbs on me five months ago, and now I’ve gained 1. There is no justice. [pause for expressions of sympathy and understanding]
I've got news, medical and social/family. First social.
To all who are wondering, I'm feeling better and better every day. I am much more mobile, and while I still get tired, it's much better than even a week ago. So much so that I'm allowing myself one "adventure" a day. These mostly involve going somewhere and sitting down to watch something (I've changed my definition of "adventure").
Liz and Robbie left Friday for her family's annual reunion in New Jersey. I really would have love to have gone, but I could tell the travel and party were still outside my limits. After seeing them off, I accepted the offer of my friend Robin, who took me--along with her family--the an orchestra performance at the local college, complete with an incredible jazz singer (Hilary Cole--look her up in iTunes) and a fireworks display at the end that exploded overhead while the orchestra played "The 1812 Overture". It was great. At intermission I ran into my friends Alan and Nancy, who invited me over for dinner the evening of July 4th. They were going afterward to their next door neighbors', mutual friends Chuck and Jenny. Chuck later made the invitation official.
Wonderful dinner of BBQed shrimp and grilled vegetables followed by a great fireworks show. Chuck's backyard had a incredible view of the festivities without the usual parking problems. Also saw many other friends at Chuck's who were suprisingly happy to see me (hmm, I don't think I owe them money). Thanks to everyone for a fabulous Friday and 4th.
I went to church on Sunday and received an embarrassing, heartfelt "welcome back". Went into work to say "hi" yesterday for an hour or so, and again today to see a friend graduate from a development program on base. Other than that, I veg.
On Monday, Liz left for a trip. My sister-in-law Jennifer was standing by to come up and help with the Robster. After some thought, I told her that I would go it alone. I'm feeling better and I thought it would be less disruptive for Robbie to have just the two of us in the house. It has worked out like a dream. He has been (with some small exceptions) an angel.
OK, medical news: had a blood test yesterday. Now a little background: each of you, as you sit there, are producing through your kidneys a chemical called creatinine. The normal range of creatinine is 0.5 to 1.5 (units unknown). Anything higher is a sign of reduced kidney function. While I was in the hospital, my creatinine levels were 56782. OK, not that high, but high. When they released me, my levels were at 5. Last Monday, I was at 2. I had an unreasoning fear this week it would be higher again. No fear—I am at 1.6, meaning nearly normal kidney function. I’m not out of the woods, but it’s mostly scrub around my knees these days.
Thanks so much for your continued interest and support. Really, thank you.
Tim
P.S. Happy Anniversary to Cristina and KC.
Wednesday, July 1, 2009
The Power of Prayer and a Medical Update
Thanks to all for the kind comments and good thoughts.
Thanks particularly to all those who included me in their prayers. If you wonder the effectiveness, or if you'd like know what a miracle looks like, it looks like this: sitting listening to your five-year-old son reading "Green Eggs and Ham" just three weeks after the ICU Lead Attending Physician told his team, "We're going to lose this one." I'll claim a small amount of credit for general cussedness (he didn't know who he was dealing with) but I know that the prayers and positive thoughts pouring in from all of you supported me in the times that were touch and go.
SHORT MEDICAL UPDATE: Went to Georgetown yesterday to have an electrocardiogram and to see Dr. Cheson. My heart appears to be in fine shape, I'm still in the clinical trial (although we may have to rethink the dosages), my kidney function is getting better as I flood the creatinine out of my kidneys, and the infectious disease people don't want to see me any more.
LONGER MEDICAL UPDATE: Unofficially (as interpreted by the tech performing the procedure, a great guy who is also a Navy Chief corpsman), my heart's in great shape, all valves firing, functioning at 100%. This is up from a low of 15% during the "bad week". As a aside, Dr. Cheson said he had never heard of a number that low. We got into see Dr. C. at 1:00 for our 11:30 appointment. Every person who had seen me at the ICU was visibly shocked when they first saw me in the exam room. All agreed my looks have improved. I have a several appointments in a couple of weeks--full body CT scan on the 13th, Dr. Cheson on the 15th, and working for an appointment with nephrology (kidney) folks on the 17th.
One slightly disquieting item. There was some fear that I might have a fungal infection in my central nervous system, so to combat that possibility, I was perscribed a two-month supply of a drug called VFEND. Without insurance, the VFEND would have cost $5200. I took it for five days and was then told, "Spinal fluid cultures came back negative, no need to take the VFEND." I'm going to work with my father-in-law, who's on the board of a Free Clinic around Appomattox, to try and find if something useful can be done with the rest. I understand the clinic may be able to swap the dispensed drugs for new drugs with the drug manufacturer. Gives you some insight into just how expensive drugs can be, and why some kind of health insurance/safety net is so important.
There's more, but one of the interesting side effects of fighting arm restraints while out of your head for several days is nerve damage in your wrists that runs up and makes all your fingertips numb. Great for typing. And I'm not fixing typos--figure it out in context.
Thanks again. Sometime soon we're going to have a "thank you" party/cookout here at the house. It will be driven by Liz's schedule, but we'll keep you posted.
Thanks again,
Tim
Thanks particularly to all those who included me in their prayers. If you wonder the effectiveness, or if you'd like know what a miracle looks like, it looks like this: sitting listening to your five-year-old son reading "Green Eggs and Ham" just three weeks after the ICU Lead Attending Physician told his team, "We're going to lose this one." I'll claim a small amount of credit for general cussedness (he didn't know who he was dealing with) but I know that the prayers and positive thoughts pouring in from all of you supported me in the times that were touch and go.
SHORT MEDICAL UPDATE: Went to Georgetown yesterday to have an electrocardiogram and to see Dr. Cheson. My heart appears to be in fine shape, I'm still in the clinical trial (although we may have to rethink the dosages), my kidney function is getting better as I flood the creatinine out of my kidneys, and the infectious disease people don't want to see me any more.
LONGER MEDICAL UPDATE: Unofficially (as interpreted by the tech performing the procedure, a great guy who is also a Navy Chief corpsman), my heart's in great shape, all valves firing, functioning at 100%. This is up from a low of 15% during the "bad week". As a aside, Dr. Cheson said he had never heard of a number that low. We got into see Dr. C. at 1:00 for our 11:30 appointment. Every person who had seen me at the ICU was visibly shocked when they first saw me in the exam room. All agreed my looks have improved. I have a several appointments in a couple of weeks--full body CT scan on the 13th, Dr. Cheson on the 15th, and working for an appointment with nephrology (kidney) folks on the 17th.
One slightly disquieting item. There was some fear that I might have a fungal infection in my central nervous system, so to combat that possibility, I was perscribed a two-month supply of a drug called VFEND. Without insurance, the VFEND would have cost $5200. I took it for five days and was then told, "Spinal fluid cultures came back negative, no need to take the VFEND." I'm going to work with my father-in-law, who's on the board of a Free Clinic around Appomattox, to try and find if something useful can be done with the rest. I understand the clinic may be able to swap the dispensed drugs for new drugs with the drug manufacturer. Gives you some insight into just how expensive drugs can be, and why some kind of health insurance/safety net is so important.
There's more, but one of the interesting side effects of fighting arm restraints while out of your head for several days is nerve damage in your wrists that runs up and makes all your fingertips numb. Great for typing. And I'm not fixing typos--figure it out in context.
Thanks again. Sometime soon we're going to have a "thank you" party/cookout here at the house. It will be driven by Liz's schedule, but we'll keep you posted.
Thanks again,
Tim
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