Sunday, August 15, 2010
Robbie story: Friday night we all were at the home of our friends Bill and Ellen, celebrating the impending departure for college of their amazing daughter (and Robbie's favorite babysitter) Elizabeth. Wonderful get together with a lot of neat people. We were in Liz's rental car, due back to Avis the next morning. As the evening grew late, Robbie came to me and asked for the keys to the car. My assumption: he was on a mission from Mommy. I gave him the keys and thought nothing. Ten minutes later, Robbie came up to me frantic and in tears. I finally got him calmed down enough to get a story out and found that somehow, against all odds, he had gotten into the rental car, started the engine, then gotten out of the rental car, and locked the door. The locked car was now idling in Bill and Ellen's driveway. Robbie was disconsolate. Liz and several other engineers commandeered a coat hanger to attempt the rescue, while (at our friend Robin's suggestion) I called Avis. Apparently we were not the first folks ever to lock keys in a car; Avis launched the duty locksmith, who arrived thirty minutes later with all the right tools for the job. The whole time we were waiting, Robbie kept running from me to Liz to the house, crying to break your heart, all the while telling anyone who would listen that it was his fault. It was so precious. Anyway, locksmith arrived, Robbie shook his hand, and the car was open in about two minutes.
My thanks to Bill and Ellen, who were phenomenally gracious, even offering us the use of a car until the situation was resolved. Elizabeth is now firmly ensconced in her new home for the next four years and her younger sister Katie has volunteered to take over babysitting duties. It was a win all the way around.
That's all for now.
Saturday, August 7, 2010
One of the reasons I haven't posted is that I've been kicking around a topic that, quite frankly, I don't like. For a couple of reasons. I don't like it, but I have to write it before I can move on to anything else. Now that I've started this post, I'll finish, but let me say up front this is not a cry in the darkness or an attempt to change any behavior on anyone's part. It's just a slightly melancholy recognition of a situation in which I find myself.
Way back when I was a teenager--just after the moon was invented--we used to float the Tangipahoa River on inner tubes, well before anyone made it a commercial activity. It wasn't known as 'tubing'. It was known as 'floating the river'. You'd always start with a core of people, but on nice days you'd often meet up with other groups. Many times they were great people and you would float for an hour or so in their company. Floating with a group is easy--it takes only minimal effort to stay close. You just have to reach out, grab an inner tube, and you're back in contact with their beer cooler. But say you get distracted and you float a little ways from the group. It can take some real effort to catch back up. Lots of flailing and splashing. Every now and then you'd find yourself so far from a group that you knew no amount of effort was going to bring you back to them. You didn't like those people any less--you just knew the river had taken you different ways and the distance between had grown too great to bridge.
So it is with social groups. It's dawned on me lately that while I still have wonderful friends, I no longer belong to any particular social group. The phone just doesn't ring anymore. No one appears to be saying, "Well, it ain't a party if Tim isn't here!" As an admittedly social creature, this is extremely disconcerting to me. The group with whom I used to hang has gone in a different direction. They zigged while I was zagging. We weren't wrenched apart; we lost contact in the fog of everyday life. Until recently I've allowed complacency, inattention, and (finally) trepidation to mask this disconnection. I've been in Southern Maryland for almost 14 years now and there are people here about whom I care very deeply. We just don't move in the same circles any more. The hardest part is knowing that I am to a large degree responsible. I am lousy at keeping up friendships (just ask my friends in Louisiana, or the Navy, or New Jersey). It's actually a pattern with me, though I usually wait until I move away from people before I lose touch. It's weird losing touch with people to whom I'm still geographically close.
I was hoping that through writing this I'd reach some epiphany, find some final satori to wrap this all neatly, but I got nothin'. When it comes to friends, I have been and am one of the luckiest guys on earth. I look through my ledger and read the names of some incredible people. To my comrades in good times and bad reading this, to those with whom I've sweated and bled and laughed and danced, to those on whose shoulders I've cried and whose tears have dampened my shoulder, I hope you know how special you are and how very much you mean to me. My hope is that some confluence of currents, eddies, and tides will bring us back together again (mainly because you ended up with the cooler).
OK, that's out of my system. On to better things.
Saturday, July 17, 2010
It's been a couple of weeks since I've had anything to post, then this week: BOOM! goes the dynamite.
Following the advice of just about every medical professional whose seen my left ear over the last several months, I went to my dermatologist this past Thursday. I've had a 1/4" circular 'thing' (I call it a thing to spare you the less savory details that a fuller description would entail) on the pinna (Google it) of my left ear for about four months now. At first I thought/hoped it was a bug bite, healing slowly due to poor circulation in the area. In my heart I knew better--I've been expecting this for the past 15 years. I was pretty sure it was some form of skin cancer (I have to learn to just say 'no').
The following are the risk factors for skin cancer (provided here for your edification):
- Fair skin. Having less pigment (melanin) in your skin provides less protection from damaging UV radiation. If you have blond or red hair and light-colored eyes, and you freckle or sunburn easily, you're much more likely to develop skin cancer than is a person with darker features.
- A history of sunburns. Every time you get sunburned, you damage your skin cells and increase your risk of developing skin cancer. After a sunburn, your body works to repair the damage. Having multiple blistering sunburns as a child or teenager increases your risk of developing skin cancer as an adult. Sunburns in adulthood also are a risk factor.
- Excessive sun exposure. Anyone who spends considerable time in the sun may develop skin cancer, especially if the skin isn't protected by sunscreen or clothing. Tanning, including exposure to tanning lamps and beds, also puts you at risk. A tan is your skin's injury response to excessive UV radiation.
- Sunny or high-altitude climates. People who live in sunny, warm climates are exposed to more sunlight than are people who live in colder climates. Living at higher elevations, where the sunlight is strongest, also exposes you to more radiation.
- Moles. People who have many moles or abnormal moles called dysplastic nevi are at increased risk of skin cancer. These abnormal moles — which look irregular and are generally larger than normal moles — are more likely than others to become cancerous. If you have a history of abnormal moles, watch them regularly for changes.
- Precancerous skin lesions. Having skin lesions known as actinic keratoses can increase your risk of developing skin cancer. These precancerous skin growths typically appear as rough, scaly patches that range in color from brown to dark pink. They're most common on the face, lower arms and hands of fair-skinned people whose skin has been sun damaged.
- A family history of skin cancer. If one of your parents or a sibling has had skin cancer, you may have an increased risk of the disease.
- A personal history of skin cancer. If you developed skin cancer once, you're at risk of developing it again. Even basal cell and squamous cell carcinomas that have been successfully removed can recur.
- A weakened immune system. People with weakened immune systems have a greater risk of developing skin cancer. This includes people living with HIV/AIDS or leukemia and those taking immunosuppressant drugs after an organ transplant.
- Exposure to certain substances. Exposure to certain substances, such as arsenic, may increase your risk of skin cancer.
- Increasing age. The risk of developing skin cancer increases with age, primarily because many skin cancers develop slowly. The damage that occurs during childhood or adolescence may not become apparent until middle age. Still, skin cancer isn't limited to older people and can occur at any age.
Anyway, she numbed me up, apologizing for any discomfort. I laughed and said that after five marrow biopsies, it really wasn't so bad. She took a biopsy sample, scraped out the rest, then cauterized the wound. Sounded funny, smelled bad, but didn't hurt. Put a bandage on it and told me that we were almost certainly done with this adventure. I figured out a carcinoma blog would likely be much shorter than a CLL blog.
Then to make the week even better--and under the heading of cosmic payback--I fell victim to an accident of a nature for which I had previously mocked others with a similar fate: My cell phone did a Back 2 1/2 Somersaults in the Tuck Position into the toilet this week. After hanging on valiantly for a few days, and even seeming to have staged a full recovery, it succumbed to its injuries Friday morning. I went to the AT&T store today and discovered today that, completely to my surprise and totally against my norm, I had taken out insurance on the phone. New one should be here in a few days.
Beyond that, DC had an earthquake, BP plugged the leaking well (maybe), and we finally got some rain. As I said, an eventful week.
Wednesday, June 30, 2010
Tuesday, June 15, 2010
Fortunately, I did run into Jenny, the Trials Coordinator, as I was about to leave and got the unofficial word: still showing progress, bad cell counts down in marrow and bone sample, but still present along with continued presence in some nodes. So I'm better, but not in remission yet.
Jenny is setting me up with another appointment in a couple of weeks, so hopefully then I'll get the answer to "What next?" You'll know shortly after I know.
[And to put things in proper perspective, a year ago today I was basically in an induced coma and on a respirator. Comparatively, this isn't so bad.]
Sunday, June 13, 2010
As we speak, he is playing Pocket God. What can I say?
Friday, June 11, 2010
Thursday, June 10, 2010
Tuesday, June 8, 2010
It's said that the sense of smell is the most evocative, the most memory-invoking of the sense. As I sit here in a waiting room, waiting for my CT scan, I can verify. On the wall here are pump dispensers of Endure Advanced Care waterless hand sanitizer. On a whim, I used some on my hand. I am now on a olfactory magic carpet back to last Summer and the hell that was. It's weird, because even knowing the phenomenon doesn't help with the flood of angst that so unexpectedly accompanied that scent. And it's not stopping--I'm going to have to wash my hands to remove the smell and drive the monsters back underneath the bed. Tomorrow I go to see Robbie's school play, the play I left last year to go to the emergency room at St. Mary's hospital. Circumstances are quite different this time around, but the smell of the hand sanitizer brings the specters of those two week around. All the sudden, I'm anxious to get the hell out of here.
This morning's marrow draw went as expected. The "Owiee" factor was a little higher than normal, but the doctor performing the procedure was nice. For the "Nick at Night" viewer, the doc looked like the older sister of Victoria Justice from the "Victorious" series. Very nice, very competent lady. Once we established that we didn't need me to don a robe for my modesty's sake, I assumed the position and we went to work. Only fly in the ointment so to speak was that I had taken asprin this morning, so I was a little more of a bleeder than would have been ideal. Every time I showed the slightest evidence of sensitivity (not from an emotional standpoint, but from a physical) she nailed me with more lidocaine. Good samples.
LATER, From home: The CT scan was non-eventful, though we did have to add another bandage over my biopsy wound, as it had bled through.
The schedule was tight on both ends: dropped Robbie at 7:45, reached the check-in desk at 10:05 (for a 10:00 appt.), donated another 13 vials of blood to the clinical trial at the lab, and was being marrowed out by 10:30. Got out of the CT scan by 2:30, in time to pick Robbie up at daycare at 4:30.
I'll go in next week to get results, but my gut tells me that we're still working towards remission, but that I'm not remissed just yet. Not setting myself up with too many expectations. Keep those prayers coming, though.
Saturday, June 5, 2010
Thursday, June 3, 2010
Wednesday, May 26, 2010
Quick note to let you know I did not make it to Georgetown yesterday for my bone marrow biopsy. Instead, I woke up with a crick in my neck that turned almost completely debilitating. It took me about 45 minutes just to get dressed--I knew there was no way I was driving in DC traffic with that neck. Several hundred mg of Ibuprofen and a day later, I have pretty much full motion back in my neck and could drive today, had my appointment been moved to today. Instead, I'll wait for Jenny to let me know when my new appointment will be. I'll keep you posted.
Monday, May 17, 2010
For those who don't know, Ashtanga yoga is named after the Hindu diety Lord Ashtang, the very sweaty cousin of Lord Vishnu. OK, it's not. But it is known as a style that emphasized raising "body heat" through a lot of movement. Add to that the unairconditioned studio which had baked to a nice mid-nineties temperature and let the torrents flow. If you don't like descriptions of large, sweaty men (easy, Meno), skip the next paragraph.
It got so bad halfway through the class, I had to flip my mat over. The mat, which is supposed to be sticky, was so sweaty that I was slipping on it. I was using hand towels to dry parts off in stolen moments between the poses. When we finally finished after a series of poses on our backs, I literally had to mop up a pool of sweat off my mat. I'm going back Wednesday night.
Welcome back to the perspiration-sensitive crowd. Now the milestone: if you look back to December 9th, you'll find the entry where I detailed taking my first Revlimid capsule. Tonight, I take my last Revlimid capsule. After this, we go into monitoring for a while to see what effect the drug had, to see if it's ready to go to Phase III of the trial process. So here we go.
I have opened a bottle of Gatorade G2 Low Calorie Fruit Punch. I am opening the Revlimid bottle. The last capsule is in my hand. I just took a picture of it which should appear as a seperate post in a few minutes. This is what Revlimid looks like. It's in my mouth. I just swallowed it. Now we're into monitoring.
Won't you join me?
Saturday, May 15, 2010
One more sign: while waiting for class to start, I was talking to a fellow student when someone said, "Hey Tim, you have a passenger." There was a beautiful orange and black butterfly that decided that where it needed to be was on my feet. It kept flying away and returning, landing on my arch or my ankle over and over again. It didn't leave until we finally started getting active on the mat.
It was a good morning.
That said, I have three more pills to take until I'm through with my current chemotherapy. 15 more milligrams of Revlimid. When I'm done, that will have been 21 pills times 5 mg/pill times 6 cycles. 630 milligrams of Revlimid. That's a little over 2 hundredths of an ounce. And it might just drive my CLL into remission. Small miracles. I go back in a couple of weeks for another (yawn) bone marrow biopsy, then we start monitoring. Hopefully, I'll see another bald eagle on my way to the biopsy.
Sunday, May 9, 2010
OK...one is the symbol 'Om'.
The second tattoo is more personal. It involves something that is special to Robbie and me, a symbol is you will. If and when I get that tattoo, I'll share it with you. If Robbie wants to get the same tattoo when he's 18, I won't stand in his way (God willing, I'm still here to stand in his way.)
Thanks again for your thoughts, your prayers, and the positive energy you send my way. It took this encounter with CLL to discover how blessed I truly am. If you are reading this, even if we've never met, you are precious to me. The light in me honors and salutes the light in you.
And Happy Mother's Day to my mom, Normie McMichael. Thank you for everything, including your contribution to my sense of humor. Thank you to my wife, Liz, mother of the wonderful part of my life, that above all else keeps this life worth living.
Saturday, May 8, 2010
Wednesday, May 5, 2010
Sunday, May 2, 2010
Saturday, May 1, 2010
Today was an absolutely beautiful Spring day. With Liz in Washington state again, the choices were either a) stay home and mow the yard or b) take Robbie to the Smithsonian American History Museum to see the locomotives. Which do you think I did? (Picture is attached as a clue). I'll mow tomorrow afternoon after church.
Sunday, April 25, 2010
Tuesday, April 20, 2010
Most mornings I awaken at 5:00 a.m., go downstairs for 20 minutes of yoga with Rodney Yee, get a shower, then meditate for 15-20 minutes before I start my day. The picture shows the dormer in our back bedroom that I've set up for meditation. This is my little altar. Yes, I use incense, and I'll explain why it really is useful some other time if you're (the collective 'you're') interested. In the picture you can see, second from the left, what looks like a ring with a yellow blob on it. This is a mala. Think of a mala as a meditation rosary, but without all the "Ave Marias" and the "Pater Nosters" (how's that for a protestant boy?). Here's some mala info I lifted from the web:
P.S. He's lost two baby teeth in the last four days. Where is my little boy going?
Monday, April 12, 2010
The Family McMichael is on Youtube: I'm there along with Liz, Robbie, and the other people watching the P-8A land at Pax the other day. Robbie is in the yellow, purple, and green striped shirt, Liz is in a brown jacket and is waving, and I'm wearing a green shirt (you see us all from the back): http://www.youtube.com/watch?v=AqdeMpo09
Saturday, April 10, 2010
What struck me while mowing was that last summer--after my June adventure--I didn't have the strength to mow the lawn, much less all the other stuff I did today. I reflected gratefully on the body's ability to bounce back from adversity and to heal itself.
A personal note to other CLL afflictees: if given the chance to participate in the Revlimid trial, do it. Just do it. One pill a day, 21 days in a row. No needles, no IVs. And it seems to be working. I have all the energy I need to lead a very active lifestyle and so far I haven't had one adverse reaction that could be attributed to the treatment. People sometimes ask me if I pray for a miracle--I tell them that I'm participating in a miracle and am already receiving the benefits of a miracle.
One other: I got to see some no-kidding Naval Aviation history today. The P-8A Poseidon, the Navy's newest anti-submarine warfare aircraft and one that has consumed major parts of Liz's (and Robbie and my) life for the last eight years, arrived in Pax River for the first time around 3:30 this afternoon. We were there at the arrival end of the runway to see it land--it passed maybe 100' above our heads on the way down to the runway. There are only so many times that a new airplane is introduced into the Navy, and only once per airplane that it comes to Patuxent River for testing for the first time. There was quite a crowd with us to greet the airplane, including family members of folks flying on the Poseidon. Lots of screaming and cheering as it settled down to the runway for landing. Don't tell me that people here are blase' and that they don't care. We were there. We saw it land. We cheered. It was cool. I'll be posting a picture soon that a nice lady there got of Liz and the airplane as it flew by.
Saturday, April 3, 2010
Tuesday, March 30, 2010
Anyway, got vitals taken and am happy to report BP: 110/70 Pulse: 71. The walking, yoga, and meditation are paying off.
Got into the exam room by 10:20 and have spent the time reviewing the new NAVAIR Fraud, Waste, and Abuse instruction. Turns out I'm pretty good at Fraud and Abuse, but I may have to go in for remedial Waste training. I understand the training is given down at our Cherry Point site.
Still waiting for Katherine, but to be fair it is still 20 minutes before my appointment time. Still planning on finding the meditation labyrinth at the Georgetown Waterfront Park afterwards, then yoga tonight. Full day.
Monday, March 29, 2010
Saturday, March 27, 2010
On the plus side, my blood counts have been great for the last few weeks. No worries.
Plenty of exercise today: I went to my bi-weekly 1 hr 45 min Dynamic Flow yoga class. Not nearly as difficult as the class two weeks ago (different instructor) and I wasn't the worst one in the class. I actually made it through the whole thing without taking any breaks. I'm not back to where I was before the hospital adventure last June, but I'm happy with the progress so far. When I got home, I was informed by Robbie that he and I were going on a 3-mile walk. So we did. I've got some liquid, malted calories coming my way tonight, so if you're in the local area and want to stop by the Olde Town Tavern around 8:00 p.m., I'll buy the first beer. If there are more than one of you, I guess you'll have to share.
On Tuesday, after my well-baby visit with Katherine (who is just about a month from her own well baby) I'll be taking the opportunity to visit the Georgetown Waterfront Park and walk their meditation labyrinth. Over the last several weeks, I've been starting every day with 15-20 minutes of meditation in a dormer I've partitioned off for that purpose. I'm intrigued by walking meditation in general and specifically in the meditation labyrinths, and am amazed at how many there are in the area. "How do I find a meditation labyrinth in my area?", you ask. Well, how about at http://labyrinthlocator.com ? Got to love the internet. For the really physically underwhelmed, you can buy finger meditation labyrinths that you hold in your lab. So Tuesday afternoon I'll be trying out my first labyrinth meditation.I've really gotten a lot out of my seated meditation and have high hopes for this venue. I'll let you know how it works out.
Wednesday, March 24, 2010
"...I shared your blog with one of my best friends...whose father happened to be diagnosed with an aggressive form of CLL last Spring. Her father is more of a private person who struggled with how to tell those around him that he had cancer especially when the outcome of his diagnosis was uncertain. Everyone responds to crises differently, some are better able to process information by sharing it, others feel the need to keep information to themselves until it reaches a point of criticality. Both are valid points of view, but in a situation such as this it can be very difficult for the loved ones of someone who is less likely to communicate about their experience. Reading your personal accounts was helpful to her because it gave her the perspective of someone going through the first person experience and she thoroughly enjoyed your upbeat tone and positive outlook. She eventually shared your blog with her father and her mother and it helped create a dialogue about how one can inform those they love about their struggles without the perception of throwing a personal pity party. Her family continued to follow your blog and her father also found the perspective of another person to be helpful. CLL is such a broad disease that it can be difficult for someone with the diagnosis to know what to expect and therefore know what to share or how to do so. It is one thing to look at survivability numbers and another thing to know the story of real life person. In that sense you gave her family support of learning more about the disease, knowing what they might expect during her father's treatment, and how someone else has coped with the diagnosis. I just wanted to let you know that through your blog you have probably helped more people than you know, and some you may never know. BTW - My friend's father underwent more traditional treatment for his CLL/ Leukemia but is now doing very well. [My friend] is copied on this email because I asked her permission before sending it and most of what I have written above is plagiarized directly from her. Not to mention that the discussion we had regarding your blog actually contributed a lot towards her letting me know what was going on in her life in regards to her father's illness and in that way was a really good vehicle for communication between us as friends."
Wow. Just Wow. Thank you.
P.S. I've never personally looked at the survivability rates. In the words of the great Han Solo, "Never tell me the odds."
Tuesday, March 23, 2010
Tim was diagnosed in February 2009 with Chronic Lymphocytic Leukemia and is now participating in a phase II clinical trial at the Lombardi Cancer Center of Georgetown University. He is currently well on his way to remission.
Tim lives in Southern Maryland with his wife Liz and their six-year-old son, Robbie, who Tim quite modestly describes as the smartest, funniest, and most beautiful child ever conceived.
Saturday, March 20, 2010
One of the tenets of Buddhist thought is to live in the "now". If you spend your life fretting about the past or worrying about the future, then you are missing "now", and when it comes down to it, "now" is all you have. Life is a continuous cascade of infinitely short "nows". Days like this make it easy to stay in the now.
P.S. - - - - - - - - - - - - - - - - - - - - - - - There, that ought to nail down the hyphen record.
Thursday, March 18, 2010
I've been invited to speak to a Cancer Survivors' Day gathering in New Jersey in early June. The title of the presentation will be "I Didn't Order the Lymphoma" and the topic will be blogging and why it's important. I hope to make it humorous (bet that surprises you).
What I need from all of you is some input on what your favorite/most memorable blog entries have been. I'll probably be reading many of the entries during the talk, and I want to make sure I get some good examples.
If you would be so kind, please comment back with the dates of your favorite blog entries and maybe some idea of what it was that made it stick in your mind. It doesn't have to be the funniest; it could be the hospital blogs that gave you information that you might not have otherwise gotten.
If you don't want to comment or haven't figured out how, please email me your inputs at email@example.com.
Tuesday, March 16, 2010
Friday, March 12, 2010
Wednesday, March 10, 2010
Turns out I did have the stamina and I did have the strength (or at least 90% of the strength). GREAT teacher named Tracy, who loves getting her feet above her head. We did a really neat, different 'flow' segment that got the sweat going, worked several poses that targeted the hamstrings (ouch), and finished with half-handstand (described in my last pre-hospital post in June), shoulder stands, and finally full handstands. Well, 75% of the class did handstands. One person--OK, it was me--just couldn't force himself up into the full handstand. We were working against a wall and I think with a spotter I could have done it, but by then my triceps were shot, so it's just as well that I watched the others.
I'm pleasantly sore today and will definitely be going back next Tuesday, assuming Liz isn't on travel.
Saturday, March 6, 2010
We had a family breakfast at Robbie's favorite new restaurant--IHOP. (Aim high, boy. Aim high.) Afterward, the Robster and I went on a "walk"--apostrophied because I'm the only one actually walking. Robbie is either on his bike or being pulled in our large wagon. Today he elected to ride the bike, and he rode it on a 3.75 mile loop without once complaining about the distance, even though his hands were getting cold. Really proud of him.
Medically I feel fine. I'm five days into Cycle Four of Revlimid, buoyed by the thought that this drug is doing the trick and knowing that its best effects normally come later in the treatment.
Also, I've been invited to speak at a Cancer Survivors' gathering in New Jersey this coming June. Said invitation was proffered by the Lady Louise, my friend who first suggested this blog. The theme of the gathering is "Laughter is the Best Medicine"; not sure why she thought of me. [smiley emoticon]. I'm thinking of a talk whose theme is "Why You Should Blog and Why You Should Make it Funny". I will also publish my consulting fee schedule.
Going to bed now. Nighty-night.
Tuesday, March 2, 2010
Good visit today with Dr. Cheson, but more on that in a paragraph or two.
After going into work at 6:30 to get a little work done today, I left for Georgetown at 8:15. Good traffic, good parking, got there at 10:15 for an 11:00 appointment. I decided to walk the Georgetown campus for a while and do what any good son would do--I called my mother. I know that's what good sons do, because I asked my brother Wilson, who happens to be a good son. Mom and I caught up with each other, trading medical stories while I climbed the hills of G-town.
Got back to Lombardi with 10 minutes to spare. Went in, signed in, got my vitals taken, and went back to the lab to get my two vials of blood drawn. Went back to the waiting area feeling all smug. That lasted until Jenny, the trials nurse, found me and dragged me back to the lab area to fill the other six vials that she needed (she told me to call her when I got there, but I forgot.) So I ended up with symmetric bandages over matching left and right arm blood draws.
I got to talking yoga with the phlebotomist who drew my blood both times. She said she was looking for some new exercise to lose weight, so I started singing yoga's praises. Then I got yet another lesson in "have no assumptions". She mentioned that when younger she used to be a weightlifter. As will happen, we started talking about 'maxes', and I nonchalantly mentioned that while in college my max bench press was 305 pounds. With no hint of condescension, she mentioned that she used to bench 350. I believed her.
ANYway, the good news: it appears that Revlimid is doing the trick. The last marrow biopsy shows 'residual' CLL where a year ago my marrow was 50% involved. Even three months ago it was at 5-10% involved. Dr. Bai, a physician working with Dr. Cheson, could barely find any of my lymph nodes, where last year they would have been obvious to a freshman pre-med student. Of course the good Doctor himself was able to find a couple, but nothing like I've had. So it looks like this is working.
Now remember, this isn't a cure. There's not a cure. But if we can get it into remission, then I buy time until a cure is found. If/when it comes back again, we drive it into remission again. It's a long term game I'm playing. But so far it looks like this round we're making good progress. If I was drinking during the week, I'd be drinking tonight.
Saturday, February 27, 2010
Friday, February 26, 2010
Also, incidently, it has been just over a year since I started this blog. Doesn't seem possible somehow--then I do some reading and think, "Been a hell of a year."
ANYway, went to Georgetown yesterday for my fourth (FOURTH!) bone marrow biopsy. [ed. note: see the February 27, 2009 entry for the story of the first bone marrow biopsy. Pretty good stuff, if I say so myself] I left very early in anticipation of blizzard-like conditions, but was pleasantly surprised by a beautiful, windy morning. Arriving at G-town at 8:15 for a 10:00 appointment, I had time to wander around the student union and to coordinate by Blackberry a response to a frantic data call by my boss (thanks, Denise and Vic).
Got back to the waiting area by 9:40, got my vitals taken (BP: 126/67, Pulse: 86, Weight: Mind your own damn business), and was in the treatment room by 10:00. This is the first time I've ever been in a treatment room at the time of my appointment. There with me were all the accoutrement needed for today's hip bone penetration. As long as the lidocaine was there, I was OK with the rest. Interestingly enough, by your fourth marrow draw you can get rather blase about the whole procedure. SO there I was at 10:00, waiting for the lovely Katherine, with only the smallest of butterflies in my abdomen.
Unfortunately, Katherine's schedule had gotten rather muddled that morning and she kinda forgot that I was waiting. She finally arrived at 10:30, apologizing profusely. I told her, "That's OK. Being seen at 10:30 for a 10:00 appointment may be a record. Besides, it gave me a chance to finish the magazine article I was reading." What? You think I'm not going to kiss up to the lady about to jab a pointy metallic bendy straw in my hip bone?
Incidentally, Katherine is glowing pregnant, and is due in the middle of May. She is truly a wonderful, sweet person and a consummate professional.
Anyway, she had me lay down on the procedure table, helped me drop trou (no, thank You!), swabbed the target area, and numbed me up. The lidocaine shots were the most painful part of the procedure and in the grand scheme of things, didn't really hurt that badly. She harpooned me without me being aware that she was in the bone--it was the best of the four procedures through which I've gone. I actually asked "Are you in?" [a question guys fear above all other], to which she replied "We're already about halfway through."
There was a eight second period of discomfort while she sucked a marrow sample out of the bone, but that was pretty much the limit of the 'owwiee'. Katherine bandaged my wound and had me lay on a cold pack for about 20 minutes, during which we discussed the advantages of having a baby in the middle of May.
The good news yesterday was that the CT scan that I thought necessary was not necessary at all. Jenny--the trials coordination nurse--delivered that news. No quart of blueberry-flavored library paste to drink yesterday. I was on the road by noon and back in the office by two o'clock. My arrival surprised at least one of my employees who, figuring I wasn't coming in after such an ordeal, had parked in my parking space (did I mention that one of the few perks of my job is that I have my own parking space?). Anyway, after I had her car towed by security, we laughed and laughed. OK, I didn't have her car towed.
In a random conversation yesterday, I discovered that Rob, a guy with whom I don't work and I would have never suspected, keeps up with my blog. I'll tell you the truth (and I apologize if this seems like whining), but many times--when I'm feeling sorry for myself--I'll think, "Why write this? What makes you think anyone anyone outside of Kim, Peggy and Meno is reading it?" Then I stumble across someone who out of the blue says, "I keep up with your blog." Blows me away. To all of you, to all of you who read this, thank you. Please feel free to leave a comment--comments make me feel like a kid on Christmas morning. But even if you never leave a comment, thank you for reading my ramblings.
Without saying why, let me say that I am once again tremendously proud of my little guy, Robbie. For those keeping track, at six years and two months, he is one inch shy of being four feet tall. Be warned: he looks like his mom, but he has my sense of humor. And he has me to mentor him. I feel a little like the emperor when he first met Anakin Skywalker, but substitute 'warped sense of humor' for 'the Dark Side'.
Hope your weekend is great.
Monday, February 22, 2010
I warn you in advance, this is not the most pleasant post I've logged, but it does actually pertain to things medical, so I'll share. Stop reading now if you don't like reading about rashes. (and sorry, I'm not posting a picture).
This weekend was a non-stop itch fest. It really sucked. Apparently, one of the side effects that Revlimid users can see is a raised rash. Actually, it's a raised rash that itches like poison ivy and wakes the sufferer from a sound sleep scratching like a dog with fleas. How do I know this? Need you ask?
What started as a small raised patch on my right flank Friday morning spread like proverbial wildfire over the weekend until it involved both my legs (with extra attention to the thighs), my arms, and enough hard to reach places on my torso to round things out nicely. Even with Benadryl, I couldn't sleep more than two straight hours on Saturday night. I was truly starting to despair--at worst, this could mean that I would be out of the trial. The rash hung around all day Sunday, seeming to move around from leg to leg, appearing and disappearing. I called and left messages with the folks at Georgetown that this crap was going on.
Liz did some Googling and found that this rash is common among Revlimid users and that it sometimes resolves on its own. Other times, it takes heavy duty steroids to knock it down. Knowing how my luck usually works, I anticipated several more nights of sleeplessness with the strong possibility of having to suspend participation in the trial for a while.
I dreaded Sunday night. Liz and Robbie went to bed; I sat in my chair watching TV and waiting for the Benadryl to kick in. After a while, I got sleepy and the itching seemed to recede, so I went to bed in the guest room, where I slept like a rock until morning. I woke up this morning to find my legs were clear. The rash was pretty much gone. Halle-frickin'-lujah.
As I sit and type this, I still have a few small patches on my legs and arms, but nothing like Sunday. Don't know if this is a reprieve or if I've 'beaten' the rash. Tonight was my last Revlimid for this cycle, so I'll get a week to clear my system. Let you know how things work out.
One last: I'm proud to announce I'm a new great uncle. My niece Heather, supported by her husband Paul, gave birth on Saturday to an 8 lb 9 oz baby boy. Ladies and gentlemen, I'm pleased to present Graham Bishop Dalton. Welcome aboard, Graham.
Saturday, February 20, 2010
Going in this week for another marrow biopsy and another CT scan. Oh boy.
Family news: My niece, Heather, gave birth to an 8 lb 9 oz baby boy today. Congratulations to her and to her husband Paul--life as you knew it is now over. Welcome to your new life.
I have had a side effect from the new medication--I've got an annoying rash here and there that itches like a fiend. Took some Benadryl and will be going to bed soon.
I did get the Mini Cooper back up the driveway today, so I've saved myself that walk now.
Going to bed.
Saturday, February 13, 2010
Nothing new medically. I'm not convinced that the new drug is doing anything, but that was one of the outcomes that was on the table when I agreed to participate in this trial. Even if this doesn't work, at least I've contributed to the body of knowlege. Hopefully, someone else is in a trial at another hospital that will help with my condition. I get more insight on the 25th when I go back for another marrow biopsy and another CT scan.
Hope your Valentine's Day is at least non-snowy.
Saturday, February 6, 2010
Friday, February 5, 2010
Had two G-town visits this week. Total time spent interacting with medical professionals: 33 min. (max). Total time spent driving to enjoy those 33 minutes: 4 hours. Total leave taken to spend with the G-town folk: 14 hours.
Had to go Tuesday for blood work to begin my third Revlimid cycle, and it has to be done the same day I start the cycle. No time to have the local labs turn it around. Thursday was my well-baby visit. Dr. Cheson was on call in the main hospital, so I met with Katherine (now visibly and glowingly pregnant) and with Jenny. All is well medically, though I am scheduled for another bone marrow biopsy on February 25th. I did some shopping on the way home ahead of our blizzard.
It's currently 8:45 p.m. Snow started falling around 11:00 a.m., and there's an accumulation of about 3 inches now. The heavy stuff and the wind is supposed to hit tonight. I'll post before and after pictures of the van after the storm, which is parked at the bottom of the driveway facing the road (Robbie's suggestion). I've been keeping up with friends on Facebook--we're all pretty hunkered in now. I've got plenty of the essentials: bread, milk, toilet paper, Kaluha, vodka, hot chocolate, and firewood.
I'll post the pics on Sunday when the snow should be gone. Wish us luck!