Sunday, December 3rd, 2017 Venice, Florida Health updateWhen we last left off, Timmy was trapped in a well, Lassie had gone for help, I was officially in remission from my non-Hodgkin Lymphoma and the plan was to... ...monitor my blood work every two weeks and visit the oncologist every four weeks, in the hope of catching any relapse sooner rather than later. Since then, I have had my blood work checked as indicated and visited the oncologist twice, most recently on Thursday. When he came into the room and took a look at me, he said that (A) I was "radiating health," (B) my blood work agreed and (C) I didn't need to come back until mid-January. All in all, it was a Sabatino's day! You might also recall that... No matter how short or long the remission period might be, and what treatment we pursue once it does, one thing is clear: odds are strong that I will not be walking this planet at a ripe old age. To that end, Alison and I have chosen to slip into what I refer to as our early, temporary semi-retirement:
"A little bit" has turned out to be around 15 hours per week (a.k.a. three hours per day) for me and one day per week for Alison. That generates enough money for us to live our newly simplified life and gives us enough time to enjoy it as much as possible. Long live the Volt
HalloweenAlison and I have never been the type to dress up for Halloween. Instead, we dutifully hand out candy and secretly hope that it will start to rain so that the crowds dwindle and we're left with a hoard of chocolate to gorge on by ourselves. This year, it didn't rain but the crowds dwindled nonetheless, leaving us with enough gorge-worthy chocolate to eat our selves sick. And that we did! Our friends and family, however, do enjoy dressing up. Here are a few photos of them. Indianapolis
Camping
The Brooklyn Golubs
ThanksgivingThanksgiving, of course, has elapsed since last we spoke. We hosted an informal, Thanksgiving-like event for Alison's side of the family on Wednesday night, then attended a slightly-more-formal Thanksgiving hosted by my sister Liesl on Thursday. In the span of 24 short hours, we visited and broke bread (with an occasional toss) with the vast majority of our combined family — parents, siblings, nieces and nephews.
Click the More Pictures buttons for all of the pictures from these two events. I apologize in advance for the overly-photographed backyard football game. MusicRachael Price is the lead singer for Lake Street Dive, a favorite band of mine of late. Like many of my favorite musicians, she popped up on A Prairie Home Companion recently. This time, she arrived without Lake Street Dive in tow and instead teamed up on stage with the Preservation Hall Jazz Band. Here are some highlights of their performance.
Who is this Sabatino?Sabatino's — a what, not a who — is an Italian restaurant in the Little Italy neighborhood of Baltimore. Just a stone's throw from Johns Hopkins, it was our go-to destination to celebrate our many "good news" visits to the oncologist as far back as 2004, when I began my care at Hopkins. They long ago perfected the staples of an Italian meal in mouthwatering fashion: salad, pasta, meatballs and bread.
Sadly, we haven't been back to Sabatino's since 2010, when I began my gluten-free adventures. For the most part, gluten-free and Italian are words that rarely sit comfortably in the same sentence. So, to come full circle back to the title of this post, a Sabatino's day is any day that overflows with very good news and (hopefully) equally good food to match.
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Monday, October 23rd, 2017 Lexington, Virginia MusicAfter I graduated from college, I spent the next two years in graduate school at the University of Wisconsin in Madison. During that time, and for another five years in Chicago after graduation, my closest and constant friend was Mike Engber, a fellow graduate student in computer science. Mike and I shared in various endeavors outside of school, some (in hindsight) more questionable than others. One of those endeavors (and this is not one of the questionable ones) involved the purchase of 200 music CDs from various artists at the rock-bottom price of 25¢ per disc. Mike had a friend that worked at a local radio station and was trying to get rid of the enormous heap of demo CDs that had been sent to them by aspiring artists. So, we each chipped in $25 and came away with 100 CDs for each of us. Over the next few months, I listened to each one of them, or more accurately, as much of each one as I could tolerate before moving on to the next one. The vast majority of them were very bad; the remainder of them were just `regular` bad. The one shining exception to this was an album named Deliverance by a young Jonathan Butler. Fast forward 30 years and 25 albums later, and Butler remains in my regular musical rotation. Health updateIf you'll recall from my last post, this is where we left off: The last vestiges of my non-Hodgkin lymphoma remain unchecked. The doctors at NIH outlined two general approaches to this situation:
Two weeks ago, we met with my oncologist at Johns Hopkins to discuss the options in question. Much to our surprise, he told us that my lymphoma is officially in remission (the "R" word) and so no treatment is needed at this time. Ignoring the question of why this hadn't been mentioned to us previously, the million dollar question is how long that remission will last. To quote the doctor: "It could last a month, or a year, or perhaps longer. We have no way at all to predict that." In the meantime, we will monitor my blood work every two weeks and visit the oncologist every four weeks, in the hope of catching any relapse sooner rather than later. No matter how short or long the remission period might be, and what treatment we pursue once it does, one thing is clear: odds are strong that I will not be walking this planet at a ripe old age. To that end, Alison and I have chosen to slip into what I refer to as our early, temporary semi-retirement:
How will we passing the time in our semi-retirement? We'll tell you next time. More music
PicturesHere are some photos that we've either taken or collected recently.
Thursday, August 31st, 2017 Baltimore, Maryland Health update
Huh?
MusicWhen we're not scouring through Wikipedia masquerading as portal hypertension researchers, we're listening to a lot of music. Here are a few that have caught my attention lately:
PicturesHere are some photos that we've either taken or collected in the last week.
Sunday, July 16th, 2017 Lexington, Virginia What's been happening?This past week, we tiptoed into the world of radiation oncology. On Monday, we met with Dr. Stephanie Terezakis, our radiation oncologist at Johns Hopkins. She explained to us some of the complexity of radiating my spleen. Specifically, my spleen is large enough that it has far outgrown its standard spot tucked under my left rib cage such that it now wraps around my kidney down below. We want to zap all of the little buggers hiding in my spleen but we want to absolutely minimize any radiation to my kidney (and elsewhere). The solution to this problem is something called intensity-modulated radiation therapy. To quote radiologyinfo.org: Intensity-modulated radiation therapy (IMRT) is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. IMRT allows for the radiation dose to conform more precisely to the three-dimensional (3-D) shape of the tumor by modulating—or controlling—the intensity of the radiation beam in multiple small volumes. IMRT also allows higher radiation doses to be focused to regions within the tumor while minimizing the dose to surrounding normal critical structures. On Wednesday, we returned for a radiation planning session. In this session, they place you on a ridiculously hard, flat surface (the back of the human body is far from flat) and slide you up and back through a CT scanner like a toasted baguette. This lasts for about 20 minutes. At this same time, a mold is hardening against your back, releasing heat as it hardens. The mold will be used to help guarantee accurate positioning of my body each time I get a dose of radiation. They even used a special belt to monitor my breathing pattern, since my spleen moves up and down with my belly as I lie on my back and breathe. I didn't bother to ask how they account for that movement. They are the experts and I trust that they know what they're doing. Looking aheadOnce the planning session was complete, we began a one-week hiatus from all things medical. We returned to Richmond, expecting to stay there for the week, but I've been feeling good enough lately (the calm before the storm) that we decided to sneak away to Lexington for the weekend. We haven't been here for two months and won't be back for two or three more, so it was the perfect time to squeeze in a visit. We will return to Richmond on Monday evening and then Baltimore on Thursday evening. On Friday, the radiation oncology team will perform a dry run of my "beams," as they call them, with me and my mold in place. Assuming it goes smoothly, the radiation therapy will begin the following Monday, July 24th. The therapy is twice a day, Monday through Friday, for two weeks. Once that is complete, all of the pre-transplant steps will begin, still targeting a transplant date of Friday, August 18th. Don't think twiceI've been trying to work as much as I can, but there are many hours during which I'm too tired to work but not tired enough to sleep. I continue to read a lot, but I've also added some YouTube exploration to the mix. I realize that much of the internet community uses YouTube simply to find the latest viral cat videos, but I use it to explore music: recordings of live performances of my favorite artists, which inevitably lead me to new artists of interest using YouTube's recommendation mechanism. With that in mind, here are two of my recent finds. Both are covers (audio only) of Bob Dylan's Don't Think Twice, I'm Alright. The first cover is by Chris Thile and Brad Mehldau. Chris is a virtuoso mandolin player and the new host of A Prairie Home Companion; Brad is an equally virtuosic jazz pianist. The second cover is by Susan Tedeschi, a Grammy-nominated singer and guitarist.
PicturesHere are some photos that we've either taken or collected in the last week. Keep an eye out for the world's first gluten-free stem cell cake!
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