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 firstname.lastname@example.org.
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.