Thanks

To my family and friends -

As most of you already know, the last six months have been both mentally and physically challenging for me. After my last treatment on March 20, I had to wait another six weeks to receive an update on my status. On April 28, I visited Georgetown for my final follow-up PET scan, which showed no evidence of malignancies and confirmed that I am in COMPLETE REMISSION! I will be going in for regular check-ups and periodic scans going forward, but as of now, I am completely cancer-free, and it feels amazing.

I just wanted to say thanks to all of you for the incredible support you have provided during my fight. Your company, emails, calls, donations, and overall positivity have helped me maintain focus and a positive attitude. I could not have done it without you and I am truly grateful.

Thanks again,

Trevor

Maybe not the front page, but still pretty cool

Just wanted to share a cool little online project the New York Times put together recently...

http://www.nytimes.com/interactive/2010/04/08/health/cancer-survivor-photos.html?ref=health#/4bc3ecebd141b90e72000053/

New Beginnings

Wow it's been a really long time since my last post...just couldn't get myself to the point where I felt like writing about cancer stuff.  I guess sometimes you just want to forget that it's there, and for some brief spans of time, it may have actually worked.  But...I figured the blog was definitely due for an update, since there's actually some GOOD news to to announce.

On March 18, I got stuck (many, many times before a successful vein was found) for what was hopefully my last chemotherapy infusion ever.  My mom and aunt came down to be with me for the last go-round, which made it much nicer to deal with.  After wrapping up the infusion, we headed over to the Georgetown Med School's courtyard meet up with Andrea and celebrate her residency placement at Johns Hopkins [her top choice!] for orthopedic surgery!  So yeah, pretty good day all around.

The next day we went to a pre-race pasta dinner event organized by Team in Training where I was recognized as the top fundraiser for the D.C. group - over $7,500 raised for blood cancer funding - thanks to everyone for your generous support over the past few months!  I was also asked to speak briefly at the event about my experiences with cancer and how it's changed my life thus far.  Fortunately, I joined my company's Toastmaster's club back in the fall and have slowly been working on my public speaking skills.  I'm happy to report that I was able to get up in front of a crowd of about 80 or so and deliver a speech that seemed to be pretty effective (over 8 minutes as well - definitely my longest so far) and coherent.

Early Saturday morning, Andrea, Lissi, Katie and me rode the Metro over to RFK, the starting point for the National Half Marathon.  It was pretty chilly when we left the house around 5:30, but it warmed up quickly and turned out to be an absolutely perfect day for running through the streets of D.C.  Right around 9am, Andrea, our friend Ryan and me crossed the finish line in 1:51:15, only about 45 minutes behind the top finisher haha.  Shortly after, Katie and Lissi both came screaming through the finish line as well.  A bunch of friends from UNC came into town and were at the finish line to celebrate with us; later we went to stuff our faces with delicious dim sum at China Garden.  And finally, to cap off a great weekend, we hosted a little (OK, not so little) shindig at our place to celebrate all the positive things happening in our lives...good times.  Just posted some pictures of the weekend on Picasa (see below)...big thanks to Aubrey for taking some sweet pics with my new camera...



Back for another update shortly (I promise it won't be a month this time)

Stepping it up

Fundraising update:  Over $6,800 raised as of today with a little less than 2 weeks of fundraising left.  I'm still waiting to see whether fellow lymphoma fighter Michael C. Hall (of Dexter fame) responds to my letter (I sent him a letter a few weeks back to say hey and  to see whether he'd consider sponsoring me), but who knows if it even made it past his manager.  In the mean time, if you know of anyone who'd be interested in making a donation, please refer them to my fundraising website.  And thanks to all of you for your support thus far!


Training update: DC's historic blizzard a couple weeks ago brought the training to a standstill, but at this point I think we're pretty much back on track for March 20.  While I've been pretty bad about getting in the two shorter weekday runs, did get two solid long runs in last weekend (9.25 miles) and this weekend (8 miles) with the TNT running group.  While last weekend was tough, Andrea and I were at the front of the pack this past weekend and were tearing up the roads in Rock Creek Parkway (I may be exaggerating a tiny bit).


I also decided last week that it's about time I do a triathlon, so I registered to compete in the DC Tri as my first sprint triathlon (.8K swim / 20K bike / 8k run) on June 20.  Kind of a spur-of-the-moment decision for me but why the heck not?  Sure, I never really learned how to swim, but that's what my girlfriend's for.  She used to be a competitive swimmer so now she has the fun task of improving my swimming so that I can minimize the amount of Potomac River water swallowed.  I had my first lesson today in Georgetown's pool.  So far I can make it about 15 meters before taking a break (i.e., less than one full length of the pool).  I obviously have some work to do over the next few months, as the .8K of swimming equates to about 30 pool lengths!). If all goes well, I'll probably be setting my sights on the Half Full Triathlon in October, which benefits the Ulman Cancer Fund, a great organization supporting young adults affected by cancer.  


Health:  After an entire week working from home (due to low neutrophil counts) and the entire following week at home due to DC's crazy snow storms, my body had plenty of time in isolation to make a strong comeback and I'm ready for round 5 of treatment this week.  Only one more in March and then a follow-up PET scan in April which hopefully shows me that I can start using the "R" word.  Overall, I haven't experienced any major side effects since the last visit to the infusion center and I'm still feeling pretty strong.  I'm back up to my normal weight and while my hair is still a little thin up top, all of the facial hair is back (bummer - was hoping it would just go away forever).  

More posts to follow shortly re: another recent spur-of-the-moment decision (is this a chemo side effect??) and some great organizations I recently discovered...

Greetings from Neutropenia

I realized today that it's been quite a while since my last post, so I'm finally making an update after 2+ weeks of dormancy.  The lack of activity is due in large part to the fact that I don't exactly want to remember my last visit to the infusion unit, as it definitely wasn't much fun this time around.  I won't go into details, but apparently I didn't drink enough good old H2O in the days leading up to round 3 on Jan 12.  This led to some problems finding a suitable vein for the IV...at the end of the day, it took 3 nurses, 30+ minutes, and several unpleasant sticks to get me hooked up (sorry for those of you who may get queasy over this stuff).  Other than this one forgettable span of time, everything else pretty well and I was feeling pretty normal post-treatment (I did experience some bouts of mild nausea, but I really think it was due mostly to the unpleasant experience).  

I've been working full-time for the most part and have been trying to stick to the half-marathon schedule as closely as possible.  Made it up to 7.5 miles last Saturday with Andrea; while this kind of mileage was considered kiddie's play back in the fall, I'm definitely starting to feel the toll that successive chemotherapy treatments are taking on my body.  My bloodwork earlier this week revealed that I have officially, for the first time since beginning treatment, entered the realm doctors refer to as "neutropenia."  This means that my neutrophil (white blood cells that fight infection) levels are super low - 500 cells per microliter (a healthy person's count can be anywhere from 1,500 to 7,000).  As a result, my body is extremely susceptible to infection at this point and I'm basically trying to sequester myself from the world...no office, no gym, no fun stuff.  My neutrophils need to be up to at least around 1,300 by next week for my next treatment, so please think good thoughts and keep your fingers crossed!

One last note: I'd like to reiterate again my gratitude to all you who have helped me over the past months with your positive thoughts, support and, of course, donations to TNT...I cannot thank you enough. I'm excited to announce that you've helped raise over $6,000 to help fund the Leukemia and Lymphoma Society's mission of fighting for blood cancer patients through advocacy, support, and research!  There's no reason to stop yet though - I still have another month of fundraising left, so if you know of friends/coworkers/businesses/ celebrities (?!) that would be interested in donating, please spread the word. Thank you again and have a great weekend.  Until next time...

TNT Update

Over $4,000 raised to fund vital cancer research and support luekemia/lymphoma patients!

Thank you so much to all of you who have supported me in raising funds for the Leukemia and Lymphoma Society.  Your response has been overwhelming and, as you can see, we blew away my initial goal of $2,000.  I'm not ready to stop yet: please pass the word on to your friends/family who may be interested in donating.  I'm also in the process of identifying potential corporate sponsorships and support from local businesses; I'm thinking a February happy hour fundraiser with a raffle/auction, so stay tuned for that.

I completed my first real training run with TNT yesterday morning (6 miles) in sub-30 degree weather.  All of the DC area teams were there and they held a Honored Teammate event after the training, where athletes and survivors alike shared their stories of dealing with leukemia/lymphoma.  I got up for about a minute and shared my story in front of about 100 other TNT'ers and expressed my thanks for everyone for committing to the cause - it was such an uplifting experience for me and it also helped to hear and meet others that have gone through the same experiences. 

Due to the temporary setback with my neutrophil count, I'm now scheduled for Round 3 this coming Tuesday.  Unfortunately (or fortunately, we'll see), that means all subsequent treatments got pushed back as well, which means the half-marathon is only 2 days after my final treatment.  I plan to keep training through this as long as I can stand on my two feet.  I hope to see all of you in March, either on the roads with me or at the finish line :)

Bummer

My third round of R-CHOP was scheduled for this past Wednesday at Georgetown.  Andrea and I drove back to DC from RI on Tuesday (horrible traffic again - I despise driving through NY/NJ) to make sure we were back on time for the treatments.  Woke up bright and early on Wednesday morning eager to get started with Round 3. I showed up around 7:30 and was shortly informed by Linda, one of the infusion nurses, that my some of my blood counts (from a sample taken the previous day) were pretty low and that she wasn't sure I'd be able to get treated. 

According to Linda, my neutrophil count (neutrophils are white blood cells that carry oxygen and help fight infection) was less than 700 cells per microliter.  The minimum required count for chemo is 1,500; counts for a normal healthy person fall anywhere between 1,500 and 7,800. Any additional chemo could have wiped out even more of my cells, forcing me down below 500 and into a condition called neutropenia and much more susceptible to infection.  So, after chasing down the oncology doc covering for Dr. Cheson (almost all of the Lombardi docs are on vacation this week, so it took a while to get a final answer), they decided to skip the chemo and give me a Neulasta shot instead.  Neulasta is a white blood cell booster that helps the body increase production of cells and fight infection. 

It seems a little weird to say, but I actually look forward to getting these infusions now and this news was definitely a disappointment to me, especially since I've been feeling pretty normal the past couple weeks.  Since Dr. Cheson won't be back until next week, there's still some uncertainty about my treatment schedule going forward.  Not sure if we'll skip this treatment all together or if it'll get pushed back to next week.  And what will happen to the following three treatments?  Typically the docs prefer to stay on strict treatment regimen, with infusions exactly 3 weeks apart.  Lots of questions I can't answer, so I guess I'll just have to wait until next week to hear from the doc.  To be safe, Andrea and I went ahead and booked additional appointments just to be safe; I'm hoping that they tell me to come in next week for Round 3. 

Andrea and I are headed to West Virgina today to spend a few days honing our (lack of) snowboarding skills.  Everybody was kind of scattered in their New Year's plans this year, so we decided it would be fun to get out of town for a few days and hit the slopes (not to mention I bought a new snowboard this past spring and I've been dying to test it out for the first time). 

I want to thank everyone again for the amazing support you've provided over the last few months.  And thank you so much for all of the awesome donations to Team in Training and the Leukemia and Lymphoma Society.  As of this morning, you've donated over $3,500!  Thank you again and Happy New Year!  I look forward to seeing all of you in 2010!

Round 2 Update

OK it's been a while since I posted anything and I keep telling myself that I should be good about posting stuff, so I'm going to try to make more regular updates. Since I have such a horrible memory, this could serve as a handy tool down road for remembering how I was feeling at points along the way.

Also, thanks to all of you for your support in my Team in Training fundraising efforts.  To date, I've raised more than $2,000 for the Leukemia and Lymphoma Foundation to help fight blood cancers!

So it's been a little more than a week since round 2 of my chemo. I went in to see Dr. Cheson the day before, just to touch base (as I'll do before each treatment). My appointment was for 11:30 but, as expected, didn't end up seeing him or his resident until about 1. Over the past couple months, I've experienced first-hand the numerous inefficiencies in the medical system and while annoying, I'm just glad I have good insurance and am able to get the treatments I need when I need them. I can usually count on my appointments with Dr. Cheson actually finally getting underway at least an hour after the scheduled time; however, I know that he's late because he is taking his time making sure each patient gets the time they deserve - therefore I have no problems waiting. Dr. Cheson reminds me of a eccentric professor or mad scientist - crazy hair, funny mannerisms - but I'm lucky to have him as my oncologist. This guy's one of the leading experts on lymphoma - has 30+ years of experience and has published hundreds of articles on the subject and heads the scientific board of the Lymphoma Research Foundation. His team of residents and nurses is equally capable and helpful; I can always count on Maura, his clinical nurse coordinator, to get me the answers/documents I need quickly.

I went in for my second round of chemo on Thurs, Dec 10. I've had morning appointments for both rounds so far, which is fine by me since I have a good choice of chairs at that point in the day. Once I get in, a nurse will measure my weight, height and vitals and then send the order down to the pharmacy for the drugs. This time around was supposed to be faster than the first time, but it ended up still taking about 6 hours in total; apparently my neutrophil count was pretty low at that point and an authorization was needed from Dr. Cheson before proceeding. No biggie though, doc gave the go ahead and I ready for the hookup. Beth has been my infusion nurse for both rounds so far and I'm really glad I got placed with her. She definitely knows her stuff and always keeps me in the know on the important elements of my treatment. She puts in my IV and gives me my pre-meds (saline, tylenol, sudafed). It takes a good hour for the hard stuff to arrive from the pharmacy, and Beth wastes no time in getting me started.

The treatment regimen I'm on is called R-CHOP, which is basically an acronym for all the drugs I'm being treated with:

• Rituxan - I get this one through IV and it takes the longest (3 hours the first time around and 1.5 going forward).  This is a monoclonal antibody and is a targeted cancer drug that attaches to the target CD20 antigens on the B-cells in my body.  My immune system is then called in to destroy the marked B-cells.  Kind of like those laser-targeting systems the military uses to blow up enemy strongholds.  Rituxan is made using rat proteins...nice.
  
• Cytoxan - Also given by IV.  Aids in the destruction of cancer cells by halting cell division by damaging the DNA that tells the cell how to copy itself.  Unfortunately, chemo does not know the difference between good cells and bad cells, hence the side effects.  Cytoxan is actually a derivative of mustard gas, believe it or not.  
• Hydroxydaunorubicin (Adriamycin) - Given by IV.  Also aids in the halting og cell division.  Classified an an antitumor antibiotic and made from the natural products produced by species of the soil fungus Streptomyces.   
• Oncovin (vincristine) - Also through IV.  This one's also tasked with disrupting the division of bad (and unfortunately good) cells in my body.  It's classified as a vinca plant alkaloid is made from the periwinkle plant.  
• Prednisone - the only drug I take in pill form; taken day of treatment and fours days following.  A type of steroid hormone that doubles as an effective antitumor therapy when coupled with the other bad boys above.  

All in all, I'm still feeling pretty good after round 2 of treatments.  Some noticeable, if minor, side effects up to this point include: pressure in my abdomen (hopefully related to the death of cancerous cells), minor headache, fatigue and a very unpleasant canker sore (which I'm happy to report has finally departed).  I've probably lost about 10 pounds since this whole mess started, and most of that's probably due to stress and muscle atrophy from not exercising for so long following my surgery.  I've also noticed that my head and facial hair has become thinner and started to change texture; it has become noticeably softer.  While not the most ideal situation, it has made shaving a bit more manageable (the hair above my lip stopped growing all together!); if there's one good thing that comes out of this whole ordeal, it might be less ingrown hairs and less excrutiating shaving.  Last week I finally noticed that my hair was slowly starting to come out, especially in the shower.  Bought an electric buzzer and Andrea went to town on my head...see her handiwork below.  Wanted to stick with the mohawk, but didn't think it would be work appropriate.

Team In Training 2010

I Owe You One Swine Flu

A timeline of the events leading up to and following Diagnosis Day ("D-Day"):

• D-Day -5: I had a cough that had been nagging me for a week or so, but nothing out of the ordinary. Peak of the swine flu hysteria: lots of Purells being distributed around the office and increased communications encouraging employees to stay home if exhibiting any flu symptoms
• D-Day -1: Annoying cough still around but no flu-like symptoms so figure I'm fine. Return home from work to hear that one of the roommates may have the swine flu
  
• D-Day, Oct 13. 2009: Decided to make an appointment with Dr. Huang, my primary care doc, just to be sure I didn't have the flu; was able to book a same-day appointment as soon as I mentioned the dreaded swine flu. During my appointment, doc concluded that none of my symptoms indicated swine flu, but decided to perform some other routine checks since it had been a while...eyes, ears, heart, stomach. While performing the standard stomach palpitations, he noticed something that did not feel quite right. I couldn't see anything different while I was laying there on the table, but I could definitely feel it. A bit firmer on the right side. Doc used his fingers to tap around my stomach - the sound from his taps on the right side were noticeably different. He recommended I get an ultrasound as soon as possible.
• D-Day +1: Ultrasound at Fairfax Radiology confirms that there is indeed an abnormal mass of approx. 7 cm in my lower abdomen. Doc recommends CT scan for further analysis.
  
  
• D-Day +2: After drinking two horrendous barium "berry" smoothies, my CT scan also confirms the preliminary findings - large mass in the lower abdomen suggestive of lymphoma. The picture above was from my CT scan - that round shape in the bottom half of my stomach is my unwanted visitor.
  
• D-Day +3: Appointment to discuss test results with Dr. Huang. Today I learned that I almost definitely have some form of lymphoma. Doc lets me know that this is about as much as he can help me and recommends seeing a hematologist/oncologist ASAP.
  
• D-Day +6: Appointment with Dr. Spira at Fairfax Oncology. He agrees with the preliminary assessment on lymphoma and recommends a CT-guided biopsy, a procedure in which an interventional radiologist uses long needle to collect a specimen from the mass. Also in my last weeks of tapering for the Marine Corps Marathon on 10/25...Dr. Spira assures me that there should be no problems in running - good news, although not the advice Mom wanted to hear
  
• D-Day +8: Appointment with the interventional radiologist at Georgetown to discuss the CT-guided biopsy procedure. At this point, I start to hear concerns from others regarding the effectiveness of the CT-guided procedure. There is the chance that this procedure will not be successful in obtaining a large enough sample for pathology to interpret. Start looking at a laparscopic biopsy as the better procedure to obtain a sample...
  
  
• D-Day +13 (Marathon Day): Nerves are high for my second marathon and I hoping for significant improvements over my first time last year. Weather ends up perfect for a long run and the spectators are out in full force. Andrea and me both end up running well and beating our PRs, despite bronchitis beating her down and my little friend hangin out underneath my abs. My final 2009 Marine Corps time: 3:55:32, almost 15 minutes faster than my 2008 time!
  

• D-Day +16: Thanks to Andrea's connections at Georgetown, get squeezed in for an appointment with Dr. Cheson at the Lombardi Cancer Center to discuss a plan going forward and Dr. Bhanot to discuss laparoscopic biopsy procedure. Dr. Bhanot's one of the country's top-rated surgeons and treated us very well, so I was confident that I was in good hands. Surgery scheduled for Friday morning with full anesthesia (was a little nervous about this since I'd never been under before).
  
  
• D-Day + 18: Into pre-Op at 7am sharp. Lots of paperwork and repetitive questions to answer for the surgery team. Head into the OR at approximately 9:30, where Dr. Bhanot makes three small incisions (for camera and tools) to remove a small sample of the mass. All finished and sent to the recovery area within an hour. They send me home with Percocet for the pain (actually didn't experience too much discomfort overall) and tell me no strenuous activity for the next 4 weeks (don't want the sutures blowing out).
  
  
• D-Day +25: Still waiting on results from pathology. Go into Lombardi to get a bone marrow biopsy (allows the docs to see whether disease has spread to the marrow). Fairly quick procedure but certainly not the most pleasant. I heard the needle was sizeable but luckily I didn't see it before it went in. Don't even know how to describe the feeling of needle penetrating your bone...not enjoyable. Also learn during the biopsy that there is some uncertaintly surrounding the exact pathology of my biopsy sample taken last week...they've sent the samples to Dr. Jaffe at NIH, a world-reknowned pathologist specializing in cancer.
  

Surprise!

My name is Trevor. I'm 27 years old. I have a good job. I exercise frequently. I don't eat McDonalds or Taco Bell. I just ran my second marathon a few weeks ago and improved my personal time by almost 15 minutes. Oh and one more thing: I was just diagnosed with cancer - lymphoma to be more precise. I wasn't expecting to hear that I had a big old tumor in my stomach when I went to see my doctor for a routine checkup in mid-October, but that's the news I received. The past few weeks have consisted of a whole lot of scrambling to make appointments, hours upon hours in waiting rooms and on doctors' tables, countless scans and biopsies and a whole lot of anxiety and uncertainty about what the heck this thing growing in my stomach actually is.

Fortunately, I now know that I do not have a little baby growing in my lower abdomen; rather, a nasty "gray zone" lymphoma has decided to set up shop in my body. I have now joined the ranks of the millions of others across the US who are also undergoing their own personal battles with cancer. While my battle will not be easy, I am now ready to focus all of my energy on kicking my unwanted visitor to the curb for good. I never thought I'd be blogging about anything, but I figure it'll provide a convenient space for documenting my experiences and sharing with others. Hopefully in 4-5 months there won't be a need for any more posts. First chemo treatment scheduled for this Thursday, so here we go. Fighters ready...