Tuesday, March 31, 2009
Session One, Day Two
Hi all. Short entry for a short day. I went for an hour-long walk through Georgetown yesterday afternoon after my first session, the better to let traffic thin out. Then back to Jim and Elena's, where I had a bowl of Elena's fabulous homemade veggie soup. Slept like a baby last night. Made it to Georgetown University Hospital (henceforth GUH) by 7:00 this morning. Took about a half-hour walk through the neighborhood. Here's a tidbit for you: the French embassy is situated immediately across from the Georgetown campus.
By 8:30 I was up on the seventh floor again, this time in Room 11. This was more a "semi-private" room with three chairs and no bed. You only get the room with the bed when you're going to be there all day, and such was not the case for me.
Jamela came in and check out my IV line. I met Mary Ellen, my nurse de jour, who was very friendly and very competent. Also met Cliff B., a gentleman with a different flavor of lymphoma than mine who is on his second round of chemo. His first pass was with CHOP, which is a very powerful chemo regime--like "lose your hair" strong. His lymphoma reappeared after a six-month remission, and Dr. Cheson brought him into a clinical trial. At Cliff's last CT scan, he was symptom-free. He was in today just for blood work. Good luck to you, Cliff.
My fludarabine showed up at 9:20 and was infused by 9:40. Mary Ellen wrapped up my IV port (which stays in my arm through tomorrow's session) and I was on the road to Pax by 10:05.
I'm including a picture of yesterday's comfy blue chair for posterity and your viewing pleasure.
Monday, March 30, 2009
Session One, Day One
8:50 a.m.--I'm sitting in Room 10 of the clinical trials infusion area, where I've been since 8:30. We're on the seventh floor of the Main Building here at Georgetown University Hospital. I've met my technician, Jameela, and my nurse, Mercedes. Jameela put in my shunt (or whatever it's called) and filled 10 vials with blood. I hooked up the computer and am now waiting for my Rituxin (I think we're starting with Rituxin) to be cooked up by the on-staff on-site chemopharmacologists. They don't mix your chemo until you show up. I'll do my best to give periodic updates as to how I'm feeling etc.
While I'm waiting for the juice, let me describe my surroundings. I'm in a nice, beige hospital suite--suite because it has its own bathroom. There a standard bed (now supporting my computer), a nice comfy chair covered in blue naugahyde (in which I'm currently sitting), a visitor's chair, a television, and a bed side table. The wall opposite the door holds a nice double window with a great view of the hills of Georgetown. The pinks, whites and greens of impending Spring are really beautiful, even given the overcast sky.
There's a refrigerator in another room we can use that has juice and cookies, etc. Pretty nice, actually. I'm wearing my street clothes and waiting. I have hooked into work and have already worked a couple of issues.
10:25 a.m.--Still waiting. I guess they're waiting for the lab work to come back before we start the festivities.
10:43--I have officially begun chemotherapy and can type while doing it. In fact, I watched the first dose entering my arm as I began typing this. I get the fludarabine first. This should take about half an hour and should have very few side effects. When this is done I get lunch, then the Rituxin. Also the Benedryl, Tylenol, and the anti-nausea drugs--apparently Rituxin is the fun one. Jim Bjostad is on standby duty to pick me up this evening if needed, but I'm hoping for the best..
11:10 a.m.--Fludarabine's done. I now get intravenous Benedryl and hopefully lunch. Also, not sure if between the IV tube and the electical cord on the pump I have the range to make it to my personal bathroom. This could be exciting.
11:16--One mystery solved. I asked Mercedes about the bathroom issue. Turns out the pump has a battery backup, so I can just unplug the whole thing and go for a walk. On a brighter note, the sun's out now.
12:08--I'm hooked up to the Rituxen and waiting for the side effects.
12:20--Lunch! Chicken salad sandwich, chips, an apple, milk, cranberry juice, and chicken soup (got to love the chicken soup). Appetite is still fine. 7.1 ml's of Rituxin in, 242.9 ml's to go.
1:55 p.m.--So far, so good. They are increasing the flow rate every 30 minutes or so. Currently at 81.9 ml infused, or about a third of the way through.
2:55 p.m.--Math problem. Tim has had 168 of 250 ml of Rituxin pumped into his body (with no apparent side effects.) If the pump is dispensing the Rituxin mix at a rate of 122 ml per hour, how much longer does Tim have to sit in the comfy blue chair? Answer will be provided in about 40 minutes.
3:30 p.m.--So far the only negative reaction I'm having is an increased heart rate, and I only know it because they check my vital signs every 30 minutes. Apparently this is very common with Rituxin. 15 ml's to go to an empty bag and putting it at a rate of a little over 2 ml per minute. Should be done in the next ten minutes.
4:00 p.m.--Psych! My calculations were based on a 250 ml bag of fluid. The nice grad student showed me how to read the bag, and it turns out the volume was actually 332.5 ml. But seeing as how I've had 316 ml already and the flow rate is now at the max 162 ml/hour (or 2 2/3 ml per minute), I should be done in another six or seven minutes. Still feeling great, but with a hint of a headache.
4:09 p.m.--The machine says it's not pumping anymore stuff and the "nurse alarm" is going off. I think I'm done. Getting a little saline now while Jameela gets Mercedes to confirm that the party's over. I've got to go down and get my long term parking pass, but I think that's it for the day.
My apologies to anyone (Pat Kohli) who was hoping for more drama (or at least a lost lunch), but I'm pretty pleased with a dull blog entry.
While I'm waiting for the juice, let me describe my surroundings. I'm in a nice, beige hospital suite--suite because it has its own bathroom. There a standard bed (now supporting my computer), a nice comfy chair covered in blue naugahyde (in which I'm currently sitting), a visitor's chair, a television, and a bed side table. The wall opposite the door holds a nice double window with a great view of the hills of Georgetown. The pinks, whites and greens of impending Spring are really beautiful, even given the overcast sky.
There's a refrigerator in another room we can use that has juice and cookies, etc. Pretty nice, actually. I'm wearing my street clothes and waiting. I have hooked into work and have already worked a couple of issues.
10:25 a.m.--Still waiting. I guess they're waiting for the lab work to come back before we start the festivities.
10:43--I have officially begun chemotherapy and can type while doing it. In fact, I watched the first dose entering my arm as I began typing this. I get the fludarabine first. This should take about half an hour and should have very few side effects. When this is done I get lunch, then the Rituxin. Also the Benedryl, Tylenol, and the anti-nausea drugs--apparently Rituxin is the fun one. Jim Bjostad is on standby duty to pick me up this evening if needed, but I'm hoping for the best..
11:10 a.m.--Fludarabine's done. I now get intravenous Benedryl and hopefully lunch. Also, not sure if between the IV tube and the electical cord on the pump I have the range to make it to my personal bathroom. This could be exciting.
11:16--One mystery solved. I asked Mercedes about the bathroom issue. Turns out the pump has a battery backup, so I can just unplug the whole thing and go for a walk. On a brighter note, the sun's out now.
12:08--I'm hooked up to the Rituxen and waiting for the side effects.
12:20--Lunch! Chicken salad sandwich, chips, an apple, milk, cranberry juice, and chicken soup (got to love the chicken soup). Appetite is still fine. 7.1 ml's of Rituxin in, 242.9 ml's to go.
1:55 p.m.--So far, so good. They are increasing the flow rate every 30 minutes or so. Currently at 81.9 ml infused, or about a third of the way through.
2:55 p.m.--Math problem. Tim has had 168 of 250 ml of Rituxin pumped into his body (with no apparent side effects.) If the pump is dispensing the Rituxin mix at a rate of 122 ml per hour, how much longer does Tim have to sit in the comfy blue chair? Answer will be provided in about 40 minutes.
3:30 p.m.--So far the only negative reaction I'm having is an increased heart rate, and I only know it because they check my vital signs every 30 minutes. Apparently this is very common with Rituxin. 15 ml's to go to an empty bag and putting it at a rate of a little over 2 ml per minute. Should be done in the next ten minutes.
4:00 p.m.--Psych! My calculations were based on a 250 ml bag of fluid. The nice grad student showed me how to read the bag, and it turns out the volume was actually 332.5 ml. But seeing as how I've had 316 ml already and the flow rate is now at the max 162 ml/hour (or 2 2/3 ml per minute), I should be done in another six or seven minutes. Still feeling great, but with a hint of a headache.
4:09 p.m.--The machine says it's not pumping anymore stuff and the "nurse alarm" is going off. I think I'm done. Getting a little saline now while Jameela gets Mercedes to confirm that the party's over. I've got to go down and get my long term parking pass, but I think that's it for the day.
My apologies to anyone (Pat Kohli) who was hoping for more drama (or at least a lost lunch), but I'm pretty pleased with a dull blog entry.
Sunday, March 29, 2009
Wish me luck...
It's 10:30 p.m. (OBTW, the timestamps you see on all my blog entries are Pacific time, or about three hours off), I'm at Jim and Elena Bjostad's, and the next time I enter anything here it will be during, or most likely after, my first Chemo session.
I'd be lying if I said I wasn't excited to get this going, and I'd be lying if I said that I'm not facing tomorrow with a certain amount of trepidation. I'm not worried about the physical discomfort--anything that making me feel like crap will be killing a lot of stuff in me that I want killed. I'm not sure that I fully understand the nature of my fear. It's something primal, something visceral. I do know that standing here in the spare bedroom of two of my dearest friends in the world, more than anything else I miss my son.
As I said above--not making a blatant appeal to sentimentalism, but--wish me luck. Here we go...
I'd be lying if I said I wasn't excited to get this going, and I'd be lying if I said that I'm not facing tomorrow with a certain amount of trepidation. I'm not worried about the physical discomfort--anything that making me feel like crap will be killing a lot of stuff in me that I want killed. I'm not sure that I fully understand the nature of my fear. It's something primal, something visceral. I do know that standing here in the spare bedroom of two of my dearest friends in the world, more than anything else I miss my son.
As I said above--not making a blatant appeal to sentimentalism, but--wish me luck. Here we go...
Saturday, March 28, 2009
On your marks, get set...
Well, it's not Chemo, but I just took my first official drug for the upcoming campaign. I took the first 300 mg Allopurinol tablet, a medicine I have to take ahead of the Chemo and that I'll be taking for the next two weeks. It helps the body ward off the adverse reaction to the byproducts of the multitudes of dead cancer cells that my liver and kidneys will be processing next week.
We went to a really nice party at Cisco and Holi Galleti's last night. Robbie and I had a great time and got to see a lot of good friends. Even made a few new friends.
I changed the bandage on my marrow extraction site this morning, which I mention only to say that Robbie helped me, and that the help was greatly appreciated. As an experiment, take a Sharpie and make a mark low in the small of your back, then try to put a bandaid over the mark. It's a bear, at least for me. Thank God for the little guy: "Robbie, can you put the bandaid over Daddy's boo boo?" Handled it like a pro.
Tomorrow, the lad and I will rendezvous with Liz--returning from a trip to Seattle--at National Airport. I'll hand over Robbie to her and then head to the Bjostad's in Alexandria, my base of operations for the next two nights.
I hope to be able to post in near real time during my infusions on Monday, and will try to share my reactions as they are happening.
We went to a really nice party at Cisco and Holi Galleti's last night. Robbie and I had a great time and got to see a lot of good friends. Even made a few new friends.
I changed the bandage on my marrow extraction site this morning, which I mention only to say that Robbie helped me, and that the help was greatly appreciated. As an experiment, take a Sharpie and make a mark low in the small of your back, then try to put a bandaid over the mark. It's a bear, at least for me. Thank God for the little guy: "Robbie, can you put the bandaid over Daddy's boo boo?" Handled it like a pro.
Tomorrow, the lad and I will rendezvous with Liz--returning from a trip to Seattle--at National Airport. I'll hand over Robbie to her and then head to the Bjostad's in Alexandria, my base of operations for the next two nights.
I hope to be able to post in near real time during my infusions on Monday, and will try to share my reactions as they are happening.
Thursday, March 26, 2009
Once More unto the Breach, Dear Friends...
Dr. Saad Jamshed. If anyone ever tells you that you need to give a marrow sample, tell them, "I want it done by Dr. Saad Jamshed!"
The whole experience today was positive; every single Georgetown Hospital employee with whom I had contact was professional and very friendly, including Maurice, an orderly on his lunch break who took the time to lead me through a maze of passageways to make sure I ended up at the right check-in counter. I could even forgive him for being a Cowboys fan.
I had three procedures done today in preparation for next week's kick-off of my trial participation: a bone marrow aspiration, an EKG, and a CAT scan. These were all courtesy of the trial. There's a lot I want to cover, so I may break it out in a couple of different blog entries.
Back to Dr. Jamshed. Dr. Jamshed is the principal investigator on the clinical trial of which I am now an official member, and the guy that did a great job with my marrow draw today. My first meeting today was with him and Damiet Smit, the trial coordinator we met on our last visit to Lombardi.
I will admit to a great deal of anxiety heading into the appointment. I was telling my "inner child" all the things that I imagined I would be telling Robbie in a similar situation. I was focusing on the fact that this momentary pain was worth the information it would provide. That it would only hurt for a few minutes. That it wouldn't hurt that bad. That if I was brave, I could get a toy afterwards. My inner child wasn't buying any of it.
I was brought back to a procedure room, where I got the chance to snoop a little before the Dr. Saad and Damiet showed up. There on the counter was my old friend, the Charles Manson Autograph Model XXL Marrow Extraction Bayonet with its attractive blue T-handle (see actual photo above). Scarier, there--lying next to the bayonet--was a sharpened length of pipe in a plastic bag labled "Spinal Needle". Fabulous! A SPINAL needle. Sweat begins to bead on my brow.
Dr. Saad and Damiet made their entrance. Before we did anything else, I initialed the 19 pages of the clinical trial consent form (which I must get around to reading one of these days) and signed a couple of more places. It was more like signing for a mortgage than a medical release, but at least it delayed my impending impalement.
The marrow extraction couldn't have gone more smoothly--even the lidocaine shots were less painful than my first experience. After I'd stripped down, donned the attractive hospital gown, and assumed a face down position on the table provided, Dr. Saad proceeded with the procedure, explaining what he was doing all along. He numbed the skin, then after a short wait numbed the bone. He made a small incision with a scapel at the point of entry, the better to reduce bruising and swelling. Dr. Saad is not a big guy, and apparently I have very healthy bones (his comment), because he had a bit a struggle to penetrate my pelvis--I think he was using a rubber mallet to drive the needle into my bone. But penetrate he did, and carried away a couple of vials of marrow, along with a chunk of bone needed for analysis. All this was done with little to no discomfort. Afterwards, I was given an ice pack to lie on and left alone with my thoughts for about 15 minutes.
The spinal needle? Turns out that's for people "over 400 pounds"--glad I lost the weight.
Damiet and Dr. Saad came back and started handing me perscriptions for drugs, procedures, and more tests--I came away with seven different perscription sheets. I start Chemo on Monday, and the first session apparently can take up to twelve hours, as they watch to see how your body handles the drugs. These are powerful drugs that start killing cancer cells immediately and in great number. These dead and dying cancer cells then leave in their wake toxins that the body has to handle. Different people handle them different ways: some people get the shakes, get itchy reactions, and other exciting side effects (besides the usual nausea and fatigue). Given the extent of my involvement, I'm also a candidate for something called "Tumor Lysis Syndrome", and as such will be taking the drug Allopurinol starting on Saturday and continuing for 14 days. I'll also be taking anti-viral (Acyclovir) and antibiotic (Bactrim) for the duration of my Chemo. I also have a script for an anti-nausea drug, should that be needed. Whew. Enough for now.
I'll tell you about the rest of the visit over the next couple of days, including the surprise I got at the CAT scan station, but it was all fairly anti-climatic after the marrow draw.
One last thought--as I wandered through the labyrinth that is Georgetown University Hospital, I was struck again and again just how lucky I really am. I saw people with real problems. I learned that the scariest word in a hospital is "pediatric", as in "pediatric oncology" and "pediatric sedation" and "pediatric haemotology". I wandered past the Major Trauma department, where I caught glimpses through swinging doors of paramedics and nurses trying to save an accident victim. I saw families sleeping in chairs, waiting for loved ones to come out of surgery. I talked to a lady whose 11-year-old son (he looked a lot like what I think Robbie will look like in six years) was going in for yet another CAT scan. In the grand scheme of things, I don't have it bad at all.
Enough pathos for now. More tomorrow on the today's trip. Monday starts the real fun.
Also, a big "hello and welcome" to my brother-in-law, Sean. He's the devilishly handsome guy whose picture now graces the "Friends" section. Hey, Sean! Don't know if I'll make the family reunion this year, but next year for sure.
Wednesday, March 25, 2009
The Whole Tooth and Nothing but the Tooth
OK, so I'm headed back to Georgetown tomorrow to get baselined for Dr. Cheson's clinical trial. Yes, I've decided to participate in the trial even though it means that I have to (gulp) give another marrow sample.
MUCH more important, we had a landmark event here in the McMichael household tonight. We are anticipating our first visit from the TOOTH FAIRY! No, not for me, but for Robbie. Earlier this evening, Liz was helping Robbie brush his teeth, and was explaining that when he got older, his baby teeth would come out and his big boy teeth would come in. No sooner was that discussion had when--pop--out came Robbie's lower right incisor! Sigh--my little guy is getting bigger. Any day now he'll be borrowing the car. Anyway, the tooth went into a plastic bag for the "money fairy". Apparently the going rate for an incisor is now $5.00 (Mom, I want to renegotiate). Robbie is proud and excited. We got a picture of his gap-toothed smile, which I'll post as soon as I get it on this computer.
Back to the more mundane, I head up to Georgetown tomorrow to get "baselined" for the clinical trial. My marrow harvest is scheduled for 10:00 a.m., and I'm hoping that the surprisingly low pain level from my first one wasn't a fluke. If they have three or four big orderlies with holddown straps in the room, I'm de-volunteering for the trial. At 12:30 I'm scheduled for another CAT scan, and I'm hoping to work in a required EKG between the two, so I can get back to pick up Robbie from school. I'll bring my computer tomorrow and try to post something between the knitting needle and CAT scan.
We are once again gratefully relying on the kindness of friends. Liz is leaving on travel tomorrow afternoon, and just in case I can't get back in time to get Robbie, Rich and Mindy Johnson have volunteered to pick him up and keep him safe until I get home. We've known Mindy for over ten years, and her son, Russell, is a school friend of Robbie's. Robbie knows he might be riding home with Mr. Rich tomorrow and is looking forward to playing with Russell's toys.
The real rollercoaster ride starts Monday with my first day of Chemo. Holy Crap. The Chemo makes it more real somehow, but I'm also relieved to get the treatment underway. More about the trial and the schedule as it makes itself clear. I'll be posting a day-by-day account of my first week in Chemoland.
Side note and update: the baseline treatment I will be receiving will be the drugs Fludarabine and Rituxan, or FR. This is a correction to an earlier post.
Finally, a special welcome to Cristina and to Shamrock1971. So glad to have you both aboard--thank you. Cristina--Robbie misses you and would love to see you sometime soon. We'll make plans. Shamrock--the birds are Kiwis (I checked).
Good night all
MUCH more important, we had a landmark event here in the McMichael household tonight. We are anticipating our first visit from the TOOTH FAIRY! No, not for me, but for Robbie. Earlier this evening, Liz was helping Robbie brush his teeth, and was explaining that when he got older, his baby teeth would come out and his big boy teeth would come in. No sooner was that discussion had when--pop--out came Robbie's lower right incisor! Sigh--my little guy is getting bigger. Any day now he'll be borrowing the car. Anyway, the tooth went into a plastic bag for the "money fairy". Apparently the going rate for an incisor is now $5.00 (Mom, I want to renegotiate). Robbie is proud and excited. We got a picture of his gap-toothed smile, which I'll post as soon as I get it on this computer.
Back to the more mundane, I head up to Georgetown tomorrow to get "baselined" for the clinical trial. My marrow harvest is scheduled for 10:00 a.m., and I'm hoping that the surprisingly low pain level from my first one wasn't a fluke. If they have three or four big orderlies with holddown straps in the room, I'm de-volunteering for the trial. At 12:30 I'm scheduled for another CAT scan, and I'm hoping to work in a required EKG between the two, so I can get back to pick up Robbie from school. I'll bring my computer tomorrow and try to post something between the knitting needle and CAT scan.
We are once again gratefully relying on the kindness of friends. Liz is leaving on travel tomorrow afternoon, and just in case I can't get back in time to get Robbie, Rich and Mindy Johnson have volunteered to pick him up and keep him safe until I get home. We've known Mindy for over ten years, and her son, Russell, is a school friend of Robbie's. Robbie knows he might be riding home with Mr. Rich tomorrow and is looking forward to playing with Russell's toys.
The real rollercoaster ride starts Monday with my first day of Chemo. Holy Crap. The Chemo makes it more real somehow, but I'm also relieved to get the treatment underway. More about the trial and the schedule as it makes itself clear. I'll be posting a day-by-day account of my first week in Chemoland.
Side note and update: the baseline treatment I will be receiving will be the drugs Fludarabine and Rituxan, or FR. This is a correction to an earlier post.
Finally, a special welcome to Cristina and to Shamrock1971. So glad to have you both aboard--thank you. Cristina--Robbie misses you and would love to see you sometime soon. We'll make plans. Shamrock--the birds are Kiwis (I checked).
Good night all
Saturday, March 21, 2009
Mind Games
It was a beautiful day here today--temperature in the high forties, blue skies with a couple of clouds.
Liz had a dentist appointment in D.C., so Robbie and I were bachelors this morning. We had a bit of a lash up this morning, when his need to watch Spongebob trumped my ability to get him out the door in time for me to go to my Saturday yoga class. If there hadn't been a hard schedule, I could have worn him down, but we had to leave NOW if I was to make class on time. Best I could have hoped for was NOW + 5 minutes. My fault for waiting until the last minute to get him ready, and for not being the type to yank him off the sofa with the "Because I'm the Daddy and I make the rules..." speech. So I missed my class and was pissy most for most of the next hour.
Instead--after Spongebob--we went to Target to buy a new showerhead for the guest bathroom, stopped at a local pizza parlor for lunch, then on a whim went to WalMart and bought a kite. We went to the local kite field (for the locals, it's on your right as you cross the bridge into Solomons Island, next to the beautiful farm) where we flew our kite in the puffy winds.
Through it all, I felt a little tired. I took a nap when we got home. Here's where the mind games come in. Before, I would have attributed the tiredness to the long week I had and the five hours of sleep I got Thursday night. Now I'm asking, "Is this the CLL? Is this the fatigue that until now has been missing? Am I starting to show symptoms? If so, why? Is this getting worse? Did I wait to late to start Chemo?" It's probably a silly set of questions, but they're still on my mind. I'll let you know how I feel tomorrow--Liz has to leave early tomorrow morning for a business trip, so it's me and Robbie alone until late Monday night. I hope this is just normal tired, because it was too easy to be cranky today.
Liz had a dentist appointment in D.C., so Robbie and I were bachelors this morning. We had a bit of a lash up this morning, when his need to watch Spongebob trumped my ability to get him out the door in time for me to go to my Saturday yoga class. If there hadn't been a hard schedule, I could have worn him down, but we had to leave NOW if I was to make class on time. Best I could have hoped for was NOW + 5 minutes. My fault for waiting until the last minute to get him ready, and for not being the type to yank him off the sofa with the "Because I'm the Daddy and I make the rules..." speech. So I missed my class and was pissy most for most of the next hour.
Instead--after Spongebob--we went to Target to buy a new showerhead for the guest bathroom, stopped at a local pizza parlor for lunch, then on a whim went to WalMart and bought a kite. We went to the local kite field (for the locals, it's on your right as you cross the bridge into Solomons Island, next to the beautiful farm) where we flew our kite in the puffy winds.
Through it all, I felt a little tired. I took a nap when we got home. Here's where the mind games come in. Before, I would have attributed the tiredness to the long week I had and the five hours of sleep I got Thursday night. Now I'm asking, "Is this the CLL? Is this the fatigue that until now has been missing? Am I starting to show symptoms? If so, why? Is this getting worse? Did I wait to late to start Chemo?" It's probably a silly set of questions, but they're still on my mind. I'll let you know how I feel tomorrow--Liz has to leave early tomorrow morning for a business trip, so it's me and Robbie alone until late Monday night. I hope this is just normal tired, because it was too easy to be cranky today.
Wednesday, March 18, 2009
Meeting with Dr. Cheson and Company
Here's an Executive Summary: I thought today was an extremely positive day. I met with Dr. Cheson and his staff. The original diagnosis of CLL seems to have been confirmed. I have been offered a spot in a clinical trial Dr. Cheson is conducting and am stongly inclined to accept (motivated largely by my fear of Nurse Baca, alluded to in my very first post). I will almost definitely be going back next week for baseline tests for the trial, including another MARROW SAMPLE!!!!! YEAH!!! The actual Chemo would begin the following week.
Here's the longer version:
I left Jim and Elena's around 7:05 and arrived at the Georgetown Hospital complex by 8:00. The nav system in my Mini Cooper brought me in perfectly, so now I know that I can get there. This is important, because it looks like I'm going to going there a lot. More on that in a few paragraphs.
The staff at Lombardi was unfailingly competent, professional, and positive, starting with the lady at the reception desk all the way up to Dr. Cheson himself. (Side note: the "Lombardi" for whom the Lombardi Center is named is in fact the legendary football coach, Vince Lombardi. There was autographed paraphenalia and other football momentos in the lobby.)
I first met with Dr. Cheson's nurse-practitioner Katherine Niknia, an extremely personable young woman. She took my medical history, then gave me a much more thorough examination than I got in Southern Maryland. She checked pretty much all the lymph nodes she could get to, measuring and cataloging the really impressive ones. After she was done, I met with Dr Cheson himself, who was really a great guy. He pretty much repeated the same examination done by Katherine. I know it's wrong, but I enjoyed the examination better when conducted by the attractive young woman. Does that make me bad?
I don't know whether to be happy, proud, or scared, but I managed to impress even Dr. Cheson with the extent of the involvement in my lymph system. He used me as a training aid to show Katherine some enlarged nodes that you normally don't normally get to feel on actual patients.
Anyway, he confirmed (pending the results of the tests on the half pint of blood test I gave today) a diagnosis of CLL, and confirmed that we want to get started treating this. He also offered me a spot in a clinical trial he's running, which I will almost definitely accept.
The clinical trial is being coordianted by Damiet Smit and overseen by Dr. Cheson. The trial will run for about 12-13 months.
The trial takes the current gold standard treatment, FC (I'll fill the drug names in tonight), and adds a new drug called Revlamid. Apparently, 30%-40% of patients do not respond to FC with full reversal of symptoms. Revlamid has shown great promise in cleaning up the abnormal cells missed by FC.
I called my expert, Nurse Baca, and asked her opinion. She was strongly enthusiastic, so that pretty much seals the deal.
My schedule will be something like this:
Months 1-6: 1 full day, 4 partial days once a month getting standard FC treatment, adding Revlamid. Everything at Georgetown (This is the standard treatment for CLL).
Month 7: Revlamid alone, going to Georgetown once per week for tests
Months 8-12: Revlamid alone, going to Georgetown once per month.
I'm writing this at a Borders in Fredricksburg, where I'm getting lunch on my way back to the 4.0 offsite. I'll finish up tonight.
Tuesday, March 17, 2009
Happy St. Paddy's Day!
Happy St. Pat's to you all.
I'm in Alexandria, Virginia, at the townhome of my friends Jim and Elena, enjoying their hospitality before my 8:30 appointment tomorrow morning with Dr. Cheson in Georgetown. I am staying in the "Taryn" bedroom, so named because it's--well--Taryn's bedroom. Taryn is Elena's beautiful adult daughter, now working in Orlando for the Mouse King, who many years ago (I believe she was either nine or eleven) made me fear physical harm from a little girl a third my age and well less than half my weight. I won't tell the whole story here--enough to say that I learned you don't wake up Miss T too early in the morning.
Earlier today I was in Richmond helping to kick off the NAVAIR Research and Engineering Group's Senior Leadership offsite meeting. Once I made sure that the Admiral was fed and that our guest speaker--the Deputy Assistant Secretary of the Navy--had his flip chart and markers, I drove up here. The drive up I-95 took me around an hour and twenty minutes. During tomorrow's rush hour, the same drive will take three hours. Hence my bunking with Jim and Elena tonight.
As I have acquired the technology to blog on the road, I'll find a Borders or a Starbucks tomorrow and give you the scoop from the Dr. Cheson session. Seeing as how it's currently 11:00 p.m., I'll close for now.
P.S. Miss Molly--so great to see you in the Friends list. It's wonderful to have you aboard for the ride. Please send me an email, as I need your address--I want to talk herbs and teas with my favorite accupuncturist. My email is at the top of the page. Love, YBLU
I'm in Alexandria, Virginia, at the townhome of my friends Jim and Elena, enjoying their hospitality before my 8:30 appointment tomorrow morning with Dr. Cheson in Georgetown. I am staying in the "Taryn" bedroom, so named because it's--well--Taryn's bedroom. Taryn is Elena's beautiful adult daughter, now working in Orlando for the Mouse King, who many years ago (I believe she was either nine or eleven) made me fear physical harm from a little girl a third my age and well less than half my weight. I won't tell the whole story here--enough to say that I learned you don't wake up Miss T too early in the morning.
Earlier today I was in Richmond helping to kick off the NAVAIR Research and Engineering Group's Senior Leadership offsite meeting. Once I made sure that the Admiral was fed and that our guest speaker--the Deputy Assistant Secretary of the Navy--had his flip chart and markers, I drove up here. The drive up I-95 took me around an hour and twenty minutes. During tomorrow's rush hour, the same drive will take three hours. Hence my bunking with Jim and Elena tonight.
As I have acquired the technology to blog on the road, I'll find a Borders or a Starbucks tomorrow and give you the scoop from the Dr. Cheson session. Seeing as how it's currently 11:00 p.m., I'll close for now.
P.S. Miss Molly--so great to see you in the Friends list. It's wonderful to have you aboard for the ride. Please send me an email, as I need your address--I want to talk herbs and teas with my favorite accupuncturist. My email is at the top of the page. Love, YBLU
Friday, March 13, 2009
Friday Night Musings
Robbie saved me tonight.
Earlier, after indulging in a nice bottle of Spanish red wine, I started a self-absorbtive entry invoking the Kubler-Ross stages of grief and where I thought I really am versus where I thought I think I am, blah, blah, blah... It was truly an invitation to a "pity party".
Then Robbie came in and wanted to play cars. So we played cars and in the interim I somehow lost the piece I had started earlier. That boy is my anchor through all of this and someday I want him to know that.
ANYway, I got a call from Dr. Cheson's office yesterday--he's the Georgetown heavyweight CLL researcher who's taking me as a patient--letting me know that they needed to move my appointment from noon to 8:30 a.m. next Wednesday. This really screws up my plans for next week. Thanks heavens for Jim and Elena Bjostad, my dear friends in Alexandria, who will be taking me in next Tuesday night, so that I can make sure I'm at Georgetown on time.
Anyway, instead of the incredibly depressing Kubler-Ross track I was going down earlier, let me change course and say that I find myself thinking (but not in a depressing way) about the finite time we all have, and how it makes me reflect on the things that I want to do "some day". If nothing else, my current situation brings into sharp focus the fact that you don't get forever to do those things: to pursue your dreams; to share your thoughts and feelings with people who are special to you. I've told myself, in different situations, "I will tell (blank) that I feel (blank) some day." But "some day" was always out there in some nebulous future. Now the future is not nearly so nebulous, or as open ended, as it once seemed. Well, this my "New Years" and my resolution is to make sure that I say those things that I've always wanted to say to the people to whom I wanted to say them sooner rather than later.
So let me start by saying to all of you who read this blog, "Thank you". I am awed and honored that you care enough to spend time reading my ramblings. Thank you for caring about me. Your thoughts and support mean more than I can say. I've said it before, and I'll say it again, I am a blessed man living a blessed life. You--you sitting there reading these words--are part of that blessing.
P.S. A particular "Thank You" to fastcobra, shorty, and subjack. I have no clue who you are, but thanks for stopping in. If you feel compelled, drop a comment on this post and reveal yourselves, or send me an email at timothy.mcmichael@navy.mil. If not, I do love a mystery.
Earlier, after indulging in a nice bottle of Spanish red wine, I started a self-absorbtive entry invoking the Kubler-Ross stages of grief and where I thought I really am versus where I thought I think I am, blah, blah, blah... It was truly an invitation to a "pity party".
Then Robbie came in and wanted to play cars. So we played cars and in the interim I somehow lost the piece I had started earlier. That boy is my anchor through all of this and someday I want him to know that.
ANYway, I got a call from Dr. Cheson's office yesterday--he's the Georgetown heavyweight CLL researcher who's taking me as a patient--letting me know that they needed to move my appointment from noon to 8:30 a.m. next Wednesday. This really screws up my plans for next week. Thanks heavens for Jim and Elena Bjostad, my dear friends in Alexandria, who will be taking me in next Tuesday night, so that I can make sure I'm at Georgetown on time.
Anyway, instead of the incredibly depressing Kubler-Ross track I was going down earlier, let me change course and say that I find myself thinking (but not in a depressing way) about the finite time we all have, and how it makes me reflect on the things that I want to do "some day". If nothing else, my current situation brings into sharp focus the fact that you don't get forever to do those things: to pursue your dreams; to share your thoughts and feelings with people who are special to you. I've told myself, in different situations, "I will tell (blank) that I feel (blank) some day." But "some day" was always out there in some nebulous future. Now the future is not nearly so nebulous, or as open ended, as it once seemed. Well, this my "New Years" and my resolution is to make sure that I say those things that I've always wanted to say to the people to whom I wanted to say them sooner rather than later.
So let me start by saying to all of you who read this blog, "Thank you". I am awed and honored that you care enough to spend time reading my ramblings. Thank you for caring about me. Your thoughts and support mean more than I can say. I've said it before, and I'll say it again, I am a blessed man living a blessed life. You--you sitting there reading these words--are part of that blessing.
P.S. A particular "Thank You" to fastcobra, shorty, and subjack. I have no clue who you are, but thanks for stopping in. If you feel compelled, drop a comment on this post and reveal yourselves, or send me an email at timothy.mcmichael@navy.mil. If not, I do love a mystery.
Sunday, March 8, 2009
"Why aren't you mad?"
You gotta love March. Less than a week ago, I was camped out in my "no electricity" living room, huddled around a fireplace on a 9 degree night; tonight I went for my evening walk wearing a thin white t-shirt. It's about 65 degrees out, which will seem a little chilly next October, but feels like the French Riviera tonight. While walking I talked on the phone with my mom.
Mom (and please don't wait to get cancer to start talking to your mom on a regular basis) is mad at my family doctor. She's mad because he blew it--I showed him what turned out to be swollen lymph glands at my annual checkup eight months before this sleigh ride began. I went untreated for two-thirds of a year after I should have been diagnosed. Mom's mad and we've talked a couple of times about why I'm not. It's come up enough that I thought I would share.
I'm not mad for a couple of reasons.
First--as polyanna as it is to say--it would be a waste of emotion and a waste of energy to allow a place at the table for that kind of anger. I'm sure there are times when anger at another can be a powerful survival tool (think Clint Eastwood in "High Plains Drifter"), but not when your real 'enemy' is inside your own body. I need my energies channeled into more productive outlets.
Second, I truly believe I'm now in a lot better place to deal with this disease and treatment--and to deal with my future--than I would have been eight months ago.
If I had started Chemo last May, I'd be done now. But I wouldn't have started practicing yoga, and I believe yoga is giving me powerful tools to get through the next several months of Chemo. More importantly, I believe it will help me tremendously in dealing with the emotional challenges inherent in living with CLL for the rest of my life.
I started taking yoga classes last spring, just a few weeks after my physical. Largely through yoga, I lost another 35 pounds and got into the best shape I've been in since we moved to Maryland. I also have begun to discover the spiritual side of the practice. It has given me glimpses of a steady, calm harbor in a sea of emotion and fear. I can only hope that as my practice grows deeper, that calm will spread.
So maybe Dr. X was supposed to misdiagnose the lymph nodes. Maybe he didn't find the cancer because I hadn't yet found the tools I needed to meet all the challenges that this will bring. He didn't find it, because I wasn't ready for him to. I can't be mad at him for that.
Mom (and please don't wait to get cancer to start talking to your mom on a regular basis) is mad at my family doctor. She's mad because he blew it--I showed him what turned out to be swollen lymph glands at my annual checkup eight months before this sleigh ride began. I went untreated for two-thirds of a year after I should have been diagnosed. Mom's mad and we've talked a couple of times about why I'm not. It's come up enough that I thought I would share.
I'm not mad for a couple of reasons.
First--as polyanna as it is to say--it would be a waste of emotion and a waste of energy to allow a place at the table for that kind of anger. I'm sure there are times when anger at another can be a powerful survival tool (think Clint Eastwood in "High Plains Drifter"), but not when your real 'enemy' is inside your own body. I need my energies channeled into more productive outlets.
Second, I truly believe I'm now in a lot better place to deal with this disease and treatment--and to deal with my future--than I would have been eight months ago.
If I had started Chemo last May, I'd be done now. But I wouldn't have started practicing yoga, and I believe yoga is giving me powerful tools to get through the next several months of Chemo. More importantly, I believe it will help me tremendously in dealing with the emotional challenges inherent in living with CLL for the rest of my life.
I started taking yoga classes last spring, just a few weeks after my physical. Largely through yoga, I lost another 35 pounds and got into the best shape I've been in since we moved to Maryland. I also have begun to discover the spiritual side of the practice. It has given me glimpses of a steady, calm harbor in a sea of emotion and fear. I can only hope that as my practice grows deeper, that calm will spread.
So maybe Dr. X was supposed to misdiagnose the lymph nodes. Maybe he didn't find the cancer because I hadn't yet found the tools I needed to meet all the challenges that this will bring. He didn't find it, because I wasn't ready for him to. I can't be mad at him for that.
Friday, March 6, 2009
CLL Info from the NCI
Short one today, following up my self-recommendation to use this time to get smarter.
Here's a link the National Cancer Society's info page on my new friend, CLL.
http://www.cancer.gov/cancertopics/pdq/treatment/cll
Quick update. Just got off the phone with a rep from the National Institute of Health. They are conducting a study and trial being run by Dr. Gerald Marti that's testing a certain Chemo combintation (FR) and have offered me a spot in that study (or 'protocol' as it's known in the business). I currently have an appointment with them on the 26th of this month.
A quick Google scan shows that Dr. Marti works (or at least worked) for the Food and Drug Administration. As I was following the Google trail on Dr. Marti, I came across what appears to be another good website: http://clltopics.org/index.php. Thank God for the Internet.
Any decision will hinge on the recommendation of Dr. Cheson at Georgetown. If his recommendation matches that of Dr. Kelly, I'm really tempted just start (see last post). I'll research and solicit opinions from my key advisers (you know who you are), then get this train moving.
Here's a link the National Cancer Society's info page on my new friend, CLL.
http://www.cancer.gov/cancertopics/pdq/treatment/cll
Quick update. Just got off the phone with a rep from the National Institute of Health. They are conducting a study and trial being run by Dr. Gerald Marti that's testing a certain Chemo combintation (FR) and have offered me a spot in that study (or 'protocol' as it's known in the business). I currently have an appointment with them on the 26th of this month.
A quick Google scan shows that Dr. Marti works (or at least worked) for the Food and Drug Administration. As I was following the Google trail on Dr. Marti, I came across what appears to be another good website: http://clltopics.org/index.php. Thank God for the Internet.
Any decision will hinge on the recommendation of Dr. Cheson at Georgetown. If his recommendation matches that of Dr. Kelly, I'm really tempted just start (see last post). I'll research and solicit opinions from my key advisers (you know who you are), then get this train moving.
Wednesday, March 4, 2009
Waiting
We lost power just before midnight when the snow got heavy Monday night and just got it back yesterday evening (we lived through the 9 degree night by camping around the fireplace.) As such, I haven't had an opportunity to write, but it strikes me that until I start Chemo, there's not that much to write about. And I won't start Chemo until after my appointment with Dr. Cheson on the 18th.
This waiting is strange--I can only relate it to being in the "marshall" stack while waiting our turn to land on the aircraft carrier back in my flying days. "Marshall" is where, at night or in bad weather, planes stack up at 1000' intervals, waiting to fly into the ship and land. Psych studies have shown that this is the most stressful phase in carrier aviation, more than landing on the boat, more than being shot at in combat. At least in those situations, you are doing something. In marshall, you're just circling in the dark or in the clouds, thinking about landing that big plane on that tiny, moving runway.
As I sit here--waiting--knowing that, however slowly, the cancer is progressing, everything inside of me screams to get this thing going. I want to start Chemo NOW! I want to start beating this thing NOW! I want to feel like I'm making progress. I need to take this time to reflect, to collect information, and to enjoy the relative health I feel. Yoga tomorrow will help. Robbie will help tonight.
This waiting is strange--I can only relate it to being in the "marshall" stack while waiting our turn to land on the aircraft carrier back in my flying days. "Marshall" is where, at night or in bad weather, planes stack up at 1000' intervals, waiting to fly into the ship and land. Psych studies have shown that this is the most stressful phase in carrier aviation, more than landing on the boat, more than being shot at in combat. At least in those situations, you are doing something. In marshall, you're just circling in the dark or in the clouds, thinking about landing that big plane on that tiny, moving runway.
As I sit here--waiting--knowing that, however slowly, the cancer is progressing, everything inside of me screams to get this thing going. I want to start Chemo NOW! I want to start beating this thing NOW! I want to feel like I'm making progress. I need to take this time to reflect, to collect information, and to enjoy the relative health I feel. Yoga tomorrow will help. Robbie will help tonight.
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