An “unremarkable” year #10yearanniversary #travelplanner #sassyspawn #6yearcancerversary #daddydaycare #xmencomefindme #brokenribs #stillonthemagicpill #alectinib #remarkableyear

It has been a year since I posted and honestly, life has been pretty “unremarkable” (clinical term for nothing going on). To me, boring is good but I realize that this may cause some angst for those who follow my story or for more recently diagnosed patients looking for guidance. In a nutshell, I am doing as well as anyone with stage IV lung cancer could be doing and here are my top 10 highlights from this past year.

10. I celebrated my 10 year wedding anniversary with my beautiful wife, Varisara. We were college sweethearts and I couldn’t imagine anyone else being by my side for all these years. When we said “in sickness and in health”, that was no joke. I’m so grateful to have been able to spend these last 10 years married (and 15+ years) with her, supporting each other and growing together in this crazy journey called life.

10 years ago!

9 & 8. One of the biggest things I want to do while I am still able is to travel the world. This year we definitely made that happen, going on 9 trips in the past 12 months. We had smaller trips (weddings in Miami and Ohio to celebrate the Theisses and the Chesrowns), a few long weekends (Atlanta for Spring Break, Chicago because Mommy travels for work alot, the San Francisco Bay area for Atitaya’s 40th, and the Bahamas with the Winkels and Andersons), one major trip to celebrate 10 years together in Paris & London, and two cruises – making a total of 8 cruises together since we started dating. It has been a whirlwind of a year exploring the northern hemisphere. I’m hoping next year we’ll be able to explore a bit further, as Avery gets older.

7. Speaking of Avery, I can’t believe I have a 7 year-old daughter. She was just 3 months old when I was first diagnosed and I remember hoping I could make it just a bit longer so I could hear her call me “dada”. Now she calls me “bruh” and plays video games, just like I did when I was younger. Although very sassy (like her mom), she is also very bright and has become insanely curious (like her dad). This year, I thought she was old enough to understand and I finally told her that I had cancer. She had so many questions like “ What is cancer?”, “Why do people get cancer?”, “Is that why you are home more now?”. It has been the joy of my life watching her grow and actually being here to raise her through some of her biggest developmental years, which has maybe resulted in creating a mini female version of myself (oops!).

6. I celebrated my 6 year cancerversary in December. It came and went like any normal day and honestly, that’s how I like them. Don’t get me wrong, it is a huge milestone – it marked 6 years from when my perspective on life changed and I focused on the things that really mattered. However, in the grand scheme of things, this is not something I want to shine a spotlight on every year (kind of how I feel about my birthday these days!).

5. Since I get to stay home more these days, I get to spend a lot more time with Avery. This year, she lost her 5th tooth and she pulled them all out herself (am I raising an aspiring oral surgeon?). I also chauffeured her (and sometimes her friends) to 5 different camps this summer, but the best part of the summer was really during the weeks where she wasn’t in camp and we got to have “daddy day care” – we went to the library, freshened up on her math skills, learned loads of new technology (i.e., new video games), and she even helped me with housework.

4. Since my last post, I have had 4 scans (all clear!). My oncologist and I started to have the talk – when should we start increasing time between scans? It’s crazy to think that since diagnosis, I have had 80+ scans (am I mutant yet?) and over 40 office visits with my oncology team. I remember in one of the first visits – when I started on the quarterly cadence – Dr. Hall said “I hope you live long enough so I can see you less often”. In case you are unfamiliar, these various scans (CT, MRI, PET) are all fantastic ways to monitor for progression; however, they emit a ton of radiation that accumulates over time and radiation is a known cause of cancer. As a doctor, I can certainly understand wanting to space out scans more because the act of monitoring cancer can actually cause new cancer, but as a patient the scans give me peace of mind that there is nothing to worry about (at least for 3 months at a time).

We are looking to space the visits out to 4 months in between scans, but we are also exploring a potential DNA marker test, which would consist of periodic blood tests to check in between scans. Less radiation, more monitoring – seems like a win to me…if we can pull it off. This is a novel test and we have to find out if my tumor cells have enough DNA to provide a baseline for the monitoring. Unfortunately, the tissue resected from my lobectomy was not able to yield any results. Wish me luck that the last sample collected before that (from my first surgery over 6 years ago) is still available and can provide the genetic material needed.

3 & 2. It has been over 2 years since my lobectomy. Recovery from this surgery is still a new norm that I am trying to get used to. I still get winded going up a flight of stairs, ran the slowest mile of my life (but at least I made it through), and randomly get phantom pains at the surgical site. I constantly have to tell myself to slow down and that I’m not as fit as capable as I used to be. Case and point – I accidentally broke 3 ribs playing pickleball. At my last scan, my doctor asked if I recently had “trauma”. I laughed to myself because I had suspected as much, but the scans actually confirmed it. I am just grateful that I am still able to stay active (although not as active as I used to be) and have one less spot to worry about (the mothership – primary tumor – that I wanted to get removed when I was first diagnosed).

1. I am still on the 1st line medication since my diagnosis, Alectinib. Because I have been able to tolerate the treatment relatively well, I have to awkwardly remind people that I have cancer because on the outside, I look perfectly healthy. The other day, Varisara asked me why I was so tired and I had to remind her that I have increased fatigue due to the Alectinib. I remember getting tired when I was finishing up residency a few years ago and even during my time as an attending, but the effects really wear you down after being on the medication for over 6 years. For those on Alectinib looking to fight the fatigue, I have found that Adderall helps to provide a temporary energy boost. I only take it when there is a real need, but over the years that has shifted from “rarely” to “occasionally”.

All in all, I actually think this has been a pretty remarkable year. I have settled into a new normal where I am granted a reprieve from being sick. I have had the privilege of seeing and experiencing many things that I never thought I would live to see when I was first diagnosed. I have been able to appreciate the things I have and try to live life to the fullest. Here is hoping for another ‘unremarkable’ year (clinically speaking)!

So long sweet summer…#superdad #worldtraveler #ALKsummit2023 #StrongerTogether #milestones

By now, I hope you’ve caught onto my philosophy that no news is good news. Last week, Avery came home from school and told us it was the last day of summer and I just thought to myself how quickly this summer (and this year) have flown by. Ever since my surgery last year, my perspective on life has sort of reset to how I felt right after my diagnosis – live your life to the fullest because you never know how many tomorrows you have left. So that is what I’ve been doing and boy, have we have been busy! Since my last post, I’ve watched Avery finish her first year of school, traveled across the northern hemisphere, and celebrated some big milestones.

I continue to relish in the opportunity to be involved in Avery’s upbringing in a way that I never would have been able to before. I’ve had the chance to volunteer at the school and attend every performance she’s had. I’ve loved every minute of being a hands on dad and there isn’t a recital or school show I would miss.

On the travel front, I was able to cross off many things on my bucket list: visiting Harry Potter World at Universal Studios, finally making it onto our cruise postponed from 2020, exploring the beautiful country of Iceland, and visiting family in Denmark.

We’ve also had the summer of Canada – visiting the beautiful Banff National Park and attending the wedding of one of my former co-residents in Toronto. In Banff, I really tested the limits of the lung capacity I have left and went on some really remarkable hikes. On one hike in particular, I felt like my heart was going to explode, but in the end it was all worth it to see this incredible view.

In Toronto, I was able to witness the wedding of one of my closest friends – someone I thought would be a forever bachelor. Not only did I get to attend my first Indian wedding (and wear the most comfortable formal wedding outfit – a kurta), but I was also able to take a day trip to Niagara Falls and experience the wonder of Nikola Tesla’s creation. Not many people know this, but Tesla was one of my favorite scientists because he persevered due to his grit and love for science despite Thomas Edison trying to screw him over.

This summer I was also able to travel to my first ever ALK summit! I have been wanting to attend this summit since 2019 (when I first found out the event existed), but with the pandemic I’ve never had the chance to attend in person….until now. I was able to meet with inspirational patients, caregivers, and doctors as well as new patients that I could give hope to, and let know that there can be a life after a terminal diagnosis.

Over the course of the last year, there are some major milestones that I never thought I would get to experience after my initial diagnosis. Kicking off with my big 5 year cancerversary in December, I’ve also had the privilege of celebrating my 9th wedding anniversary with Varisara as well as watching my daughter finish her first year of grade school AND turn 6. She was just 3 months old when I was first diagnosed and at the time I thought I only had 3-6 months to live. I hoped and wished to see her turn 5 (call me greedy), but now that I’ve enjoyed these past 5 years post diagnosis I want more and am crossing my fingers that research and science will get me there.

On the health front, I also hit a big milestone – my 25th scan since diagnosis. For the past 5 1/2 years, I have received scans 4x a year with a few extra scans last year post-op. I’ve had two scans since my last post and both have been unremarkable a.k.a. boring – which is what I prefer when it comes to my scans. #26 is scheduled for right after another big milestone – my 36th birthday. In the Chinese culture, the 36th year signifies the completion of a third cycle around the zodiac (I was born in the year of the rabbit and 2023 is also the year of the rabbit).

Here’s to hoping for more big milestones to come!

5 Years! #recovery #retirement #hyperthyroidism #cancerversary #CheersToFiveyears

Since my last post, life has improved significantly. On the health front, things are generally good. My scan in October showed improvement of the post-surgical fluid surrounding my lungs, but at that time there was a bit of activity showing up in my scan around my neck. I was also having trouble gaining back the weight I had lost since the surgery (I was down over 20 lbs since the surgery!). Coincidentally, I also had a physical exam with my PCP right around the same time and found out that I had hyperthyroidism, which explained most of the symptoms (i.e., weight loss, activity in my scan, and sleeping hot at night). I started methiamazole in November to counteract the hyperactivity in my thyroid. Hot off the press, my scan yesterday showed that the abnormality around my thymus has resolved and everything else looks good! The one interesting thing that my scan showed that all my organs have shifted to the left to fill in the void that my resected lung left behind, but I guess that’s all part of the NEW new normal.

Similar to how I felt when I was first diagnosed, the complexities during and after my surgery reminds me to take everything one day at a time. I had settled back into old routines and was comfortable living a “normal” life for 4.5 years since I first started taking Alectinib, but these past 6 months have given me a renewed perspective on life. I am making the most of the situation and trying to enjoy life as much as I can with family and friends.

In September, I crossed another item off my bucket list and went to Italy for the first time. I loved seeing the history first hand and the culinary experience was superb.

I was able to celebrate by 35th birthday with some of my closest friends touring the brewery/cidery scene in Charlottesville, VA…in high style!

I was also able to go to the Dominican Republic for some time away with family.

On December 16th, I celebrated my 5 year cancerversary. I still remember when I received that horrible diagnosis and thought I only had a few months left. I’ve been so fortunate that my treatment continues to keep the cancer at bay with the occasional road bumps a long the way. I’ve finished my residency, saw my daughter attend the first day of school, visited multiple countries, and many more things. Thanks to my amazing wife, I was able to celebrate with friends and family who have made an impact on my life. I was completely surprised and so grateful to see people from all the different stages of my life – from college, dental school, residency, and even high school! Big THANK YOU to Varisara for setting this up and thank you to everyone who traveled from near and far to attend!

I also wanted to thank the many people who were not able to attend and sent their well wishes. Although this was not intended to be a fundraiser, we have raised $1450 (and counting!) for ALK positive lung cancer research thanks to the generosity from friends and family from all across the country. I truly appreciate all of the support, whether in person or from afar. Cheers to 5 years and many more to come!

Recovery Rollercoaster #wrongkindofR&R #pillspillspills #pneumothorax #8weekspostop

It has been just over 8 weeks since I had the left upper lobe of my lung removed and recovery has been quite the journey. After I got home, I had an extensive pill regimen of pain killers (oxycodone, gabapentin, acetaminophen, ibuprofen) in addition to my usual doses of blood thinners (Eliquis) and cancer TKI medication (Alectinib) – I was up to over 30 pills a day! The pain was more intense than I expected it to be – after-all, I have been through a spinal fusion before. I think the difference is that when I had my spinal fusion 4 years ago, I was at a 9 out of 10 in pain due to the compression from the tumor and the surgery immediately removed the pain so even a 3 or 4 felt like nothing. This time, however, I went from no pain to a 10/10 in the hospital. Even though it was no longer at a 10 when I got home, I had a constant ache in the upper left abdomen (again – oddly not the chest) that remained perpetually around a 7. The worst pain was at night; the pain would wake me up after 2-3 hours of sleep and the pain medication would take a while to kick in so I had restless sleep for the rest of the night. Regardless, I was determined to quickly wean myself off the pills so I stopped cold turkey when my oxycodone ran out after 2 weeks. That was a mistake – trying to get a hold of the thoracic surgery team on the weekend was more difficult than I expected and I spent Father’s Day in a terrible pain. I was finally able to have the prescription refilled Sunday evening. I learned my lesson and this time around, I slowly tapered down my dosage when I started to reach the end. At my post operative follow up appointment 4 weeks later, my thoracic surgeon told me that it is not uncommon to have pain for even few months after surgery, which made me feel better. Fortunately, now I’m down to one last line of pain control, Gabapentin (a nerve pain medication), which that I’ll likely be on until the pain goes away for good.

I also learned at my post op appointment that I had a slight pneumothorax (an air pocket in the chest cavity) in the upper portion of the chest and hydropneumothorax (fluid in the chest cavity) in the lower portion of the chest lingering from the surgery. Typically, this could require intervention to drain the fluid, but since I am not feeling any negative symptoms (and quite frankly don’t want any more tubes coming out of me anytime soon) I declined. As long as I’m still feeling well, the doctor agreed that we can just continue to monitor things.

CT scan of my chest showing an apical pneumothorax on the top of my left lung (right side of picture) and missing my left lower lobe of my lung.

I also had a follow up upper endoscopy at the beginning of July to determine what might have caused the obstruction that I experienced in the hospital. I haven’t had any issues since I returned home, but I think the thoracic surgeon wanted to be sure there wasn’t an underlying cause. The results were unremarkable and everything appeared clear! My theory remains that the obstruction was caused by me eating too much food before the anesthesia medication wore off post operatively, but I hope to never have to test that theory again.

This past week, I had my routine scans with Dr. Hall (my oncologist) and things remained stable in the rest of the body, including the brain. The CT scan, however, was still showing a slight pneumothorax as well as fluid in the chest cavity. Over time, what’s remaining in my left lung should expand to fill the space and my body should naturally absorb the fluid so I will be going back in 6 weeks for a follow up to monitor the progress.

Since I’m not able to do much in during recover, in my spare time I’m getting reacquainted with my love for technology. I built a gaming computer and started playing video games with my friends and cousins (just like we did as teenagers). I have also been learning piano (something I’ve always wanted to do, but never had the time to) and spending quality time with Avery and Varisara. We’ve also had quite a few visitors who have come by to check on me during recovery and old friends who have reached out to make sure I’m doing ok,

Although the past couple of months have not been as straightforward as I hoped, I am thankful everyday to have made it through toughest part of the surgery and to have such a supportive network of friends and family.

One hell of a week #lobectomy #pneumothorax #SMAsyndrome #NGtube #forceddiet #tethered

When I first started this blog, it was intended to keep friends and family updated on my journey, but throughout the years this has also become a place where fellow ALK positive cancer survivors can learn to help inform their treatments as well. All this to say, the below may be very medically dense so be warned!

Last Thursday, I woke up bright and early at 4am to arrive in Charlottesville at 5:30am for the big procedure. I was the first case of the day so I expected to be in recovery shortly after lunchtime. Being the wonderful wife that she is, Varisara arrived in the recovery room with a bag full of pastries and bread because she knew I would be hungry after the surgery (which I was). She told me that she talked to Dr. Martin and the surgery went well – they removed the upper left lobe and a few lymph nodes as planned, but they also had to remove part of the lower left lobe unexpectedly as well because the disease appeared to be attached to the fissures between the upper and lower lobes. This caused a moderate volume pneumothorax, when air leaks into the space between the lung and chest wall, which meant that the chest tube would likely need to stay in for longer than I initially expected (I was hoping to be out of there in 2 days).

That afternoon, I generally felt ok but had a bit of brain fog and nausea, which I assumed was from the anesthesia medication. I pretty much just stayed in bed with my eyes closed for the afternoon, but I did chow down on some croissants, bread, and Sour Patch Kids hoping that all would somehow help the nausea. That night, I went to bed fine, but I woke up in the middle of the night to vomit twice, each time expelling over a liter of fluid.

The next day, they removed my foley catheter because they expected me to begin moving around to help with recovery – boy, were they wrong! I was no longer nauseous, but I was starting to feel the pain. Oddly, the pain was not in my chest; rather, it was in my abdomen. I didn’t eat much because of the pain and every time I took a sip of water, I felt very full. It gradually worsened throughout the day; my abdomen felt like it was getting more firm and it was getting harder to breathe as the day progressed. By mid-morning, breathing was incredibly difficult and my breaths became very shallow – so much that I could not talk or keep my eyes open. When I was originally diagnosed with cancer, I always feared that I would not live as long as my peers and that night, I felt that I was pushed to the limits and death or serious complications were about to occur. Over time the doctors grew more and more concerned and thought that it was strange that my pain level was at a 10 out of 10, but I felt no pain at the surgical site. They decided to do a CT scan to figure out what was going on.

Radiology noted that the blockage appeared to be Superior Mesenteric Artery (SMA) syndrome, a digestive condition that occurs when the duodenum is compressed between two arteries (the aorta and the superior mesenteric artery). Traditionally, SMA syndrome occurs over a long period of time and is due to rapid weight loss. Personally, I don’t believe this was SMA syndrome because I had minimal weight loss (part of which was the lung that was removed) and the blockage occurred rapidly. I think the cause of the problem is very similar, but was rather due to my gastrointestinal system still being asleep from anesthesia when I rapidly consumed my food immediately after surgery. This as a post-operative complication was so bizarre that Dr. Martin said she had never seen something like this in her 20 years in practice.

Illustration of SMA syndrome

The obstruction in my duodenum caused me to be massively distended (and when I say MASSIVE, I mean it was the size of a watermelon). Now that we knew WHAT was wrong with me, we needed to figure out HOW to fix it. They immediately put in a nasogastric (NG) tube up my nose and down to my stomach to suction out the fluid. I was not allowed to eat or drink anything – not even a sip of water – until they were able to decompress my stomach. This included oral medications, which meant I had to stop taking Alectinib (my cancer medication) until this was resolved. They also had to reinsert the foley catheter to drain my bladder because of my decreased mobility (Pro tip: I would NOT recommend doing this awake if at all possible). At this point, going anywhere proved to be logistical challenge with a chest tube from the surgery, the NG tube, several lines of IVs and now a foley catheter.

They also discussed potentially inserting another tube into my intestines past the obstruction to pump food and nutrients into my body, but I already felt tethered to the bed due to all the other tubes and IVs. Fortunately, the Thoracic team consulted with the experts on the abdomen (i.e., the General Surgery team) to determine next steps. They suggested monitoring to see if my body could naturally alleviate the blockage and only recommended the nasogastric tube feeding only as an escalated alternative. We decided to drain the stomach for the next day, provide nutrition through Total Parenteral Nutrition (TPN), an intravenous method of feeding people by giving nutrients through an IV, and monitor for improvement.

For the next day or so, I was in pretty intense pain ranging from a 4 when I was heavily medicated (with Ketamine, Toradol, IV Acetaminophen, and Dilaudid) to an 8 when the medication wore off, but the pain was becoming more “normal” for the surgery that I had (i.e., the pain slowly shifted from my abdomen to the chest). In the one day that I had the NG tube suction in my stomach, roughly 4 liters of liquid was drained! Now with less liquid in my belly and a tolerable pain level, I knew that I needed to get up and walk around; not only to help the healing process for the lungs, but also to get my bowels moving so that my body could correct the obstruction spontaneously.

By Sunday, my surgical recovery for my lung was going relatively well. The pneumothorax had decreased in size since, which meant they were able to remove my chest tube as well as the foley catheter. This was a huge win and had it not been for the intestinal obstruction, I would have been discharged. Alas, I remained in the hospital – now with just 1 tube and multiple IV lines.

With the lobectomy recovery in a good spot, I focused my efforts on correcting the intestinal obstruction and reducing my reliance on medications administered by IV.

For the gastric (stomach) distension, we decided to clamp the NG tube for 4 hours to test the level of blockage. If the drainage was under an acceptable threshold (less than 250ML), then I would be able to start very slowly with small sips of water. After 4 hours, we drained 150ML from my stomach – well under the threshold – so I was finally able to have my first sips of water in 2 days. Talk about refreshing! Since I felt well after my water trial, they removed the NG tube and advanced my diet the next morning. Clear liquids was my Monday diet plan (I had lots of Gatorade, soup broth, jello, and more water). By Tuesday, my body seemed to be responding well to the clear liquids so I was advanced to a full liquid diet. By that evening, I was advanced to a transitional diet (very bland, easy to digest food) and I could start to see a light at the end of the tunnel.

All the while, I was slowly trying to transition myself to oral pain medications. When I was upgraded to a clear liquid diet, I transitioned to liquid Tylenol, ibuprofen, oxycodone. Then when I could have a full liquid diet, I was able to start back on my Alectinib after being off for 3 days and added Gabapentin (for pain) and Robaxin (muscle relaxer). By Tuesday night, I also transitioned off Ketamine and Toradol and was only using Dilaudid as needed when there were bouts of intense pain.

By Wednesday, I was back on a full diet and adequately managing my pain via oral options. I felt like I had made a complete 180 from where I was on Friday and thankfully the surgical team agreed – I was discharged that afternoon! When I went in, I thought I would be home by the weekend. Dr. Martin indicated that lobectomy patients typically stay in the hospital for 2-6 days and being young and relatively healthy, I expected to be out on the lower end of that range. Here I was 6 days later, but SO glad to be out.

Finally out of the hospital after 6 days!

Since being home, I’ve had some pain at my chest tube and incision sites and I’ve noticed that walking up and down stairs is a bit more difficult, but nothing unusual for having a quarter+ of my lung removed. I’ve felt great otherwise and I was even able to take Avery to her Kindergarten sneak peak 2 days after leaving the hospital! I know that recovery will take time, but I am just so glad that things are are starting to level out – I’ve had my fair share of excitement in the past 10 days.

It’s not life without the occasional speed bump #oligoprogression #alectinib #52monthsPFS #surgery #controllingthedisease #daddydaughterweddingduties

Thursday April 21, 2022 – Another day to add to my timeline in this battle. After 4 years of clear scans, my progression free survival (PFS) on Alectinib as a first line treatment is 52 months. Something felt off all day on that Thursday when I had my routine scans and appointment at UVA.

After having 16 CT scans since starting this journey, I knew what to expect walking into each. There is a certain chill I’ve come to anticipate during the scan and this time, the chill was delayed. When we were called in for my appointment with Dr. Hall, the wait in the room seemed longer than usual. I knew something was off when he entered the room. Usually, when Dr. Hall enters the room the first thing he says is “your scans look good”. This time he asked “how are you feeling?”. He pulled up my most recent and past CT scans and it revealed an area above the original tumor site in the lung that has started lighting up brighter over the past 18 months. In past scans, it has appeared as ground glass, but this time there was definitely something more substantial.

Just to be sure we decided to have Dr. Hall present my case at tumor board the following week where the oncologist, radiologist, radiation oncologist, and thoracic surgeon specializing in cancer meet weekly to discuss unique cases. It was a long weekend of waiting to hear back and finally on Tuesday night, I received a call from Dr. Hall. After looking at the scans from different angles, they confirmed that something was changing and it was concerning in the upper left lobe of the lung. Initially at my appointment, we had discussed radiation; however, after reviewing the scans at tumor board, they discovered there were spiculations coming out of the lesion that the radiation may not be able to completely eradicate. After a long conversation about options, I asked Dr. Hall what he would if he were in my shoes and he said he would surgically remove it to ensure we got it all. This would also allow us to test the tissue to see what type of resistance the tumor may have acquired. Similar to COVID and other viral diseases, the cancer cells are being kept at bay by the medication I take everyday but over time the disease always wins and develops a new mutation that outsmarts the medications. The goal of surgery would be to remove the cells that have figured out how to beat the medication in hopes of continuing the same treatment regimen. This is important because there are not very many options after this pill and would likely lead to a chemotherapy, which has not been shown to be as effective as the medications I currently take.

After my phone call discussion with Dr. Hall came the marathon of scans and appointments the following Wednesday. I had an MRI on the brain and PET scan of the rest of the body to determine if this was oligoprogression, a state where a single/few lesions display further progression after an initially successfully systemic therapy. Fortunately, the scans confirmed there was only the single spot of progression in the lung and after another appointment with Dr. Hall to review the scans, we elected for surgery as the next course of action. I also had blood taken for a liquid biopsy with Guardant, which tests your blood for circulating tumor DNA to allow for molecular analysis to understand if there are specific targetable mutations for better treatment planning in the future.

PET Scan showing the increased uptake in the left lung where the tumor is suspected to be from CT scans. It may sound weird but I was glad that the PET scan was positive because I no longer had to make the difficult decision of treating the tumor vs waiting and watching if the test had been inconclusive.

Next, I met with Dr. Linda Martin, a thoracic surgeon at UVA. She works with Dr. Hall on the tumor board and was highly praised by other surgeons within her field. After speaking with her about the procedure, we decided to move forward with scheduling the surgery to remove the upper left lobe, which is quite a large chunk. I was expecting to have minimally invasive surgery so that my recovery would be quick and the incisions would be small, but due to the previous history of cancer in my chest there was concern that too much scar tissue would be present. The scar tissue would have made it difficult to adequately remove the cancer and surrounding lymph nodes with only a minimally invasive approach. This means I would be having a more aggressive open approach, thoracotomy, to remove the left upper lobe of my lung. Since I was already at the hospital, I also completed my pre-anesthesia evaluation for the surgery. It was a very long day, but I was glad to come out of it with a very clear plan. Next up, I have a pulmonary function test scheduled for 5/19 and then the big surgery will be on 5/26.

I knew this day would come at some point because we still haven’t been able to figure out how to stop the disease from outsmarting the targeted therapies. I was hoping that it wouldn’t have occurred as soon, but I am very grateful to have beat the average PFS for Alectinib of 34.5 by almost 1.5 years. I have also seen great success continuing on Alectinib following targeted removal of oligoprogressive lesions from other ALK positive survivors and am hopeful that removing this one spot will allow me to continue on the Alectinib for many more years.

After 2 long weeks, I was able to take my mind off of everything that was going on with my health and reconnect with many of my colleagues at the wedding of one of my fellow OMFS attending’s (and former co-resident), where I was a groomsman and Avery was the flower girl. We were so honored to be part of the celebration for Drs. Daniel and Annie Hawkins.

Everyone has hiccups and speed bumps that occur throughout their life. But these hurdles that occur shine light on the many things that I am thankful for. I have co-workers and a department that have been so understanding and have made sure that I have as much time as I need to heal and recover. I have friends and family that have shown so much support and love as I shared this terrible news. I have the most amazing wife who has stood by my side and been my rock as I weather this storm. In case I don’t say it enough, thank you all for everything. It has been a very tough few weeks (to say the least), but for now I will continue to live life one day at a time and savor every moment!

So many reasons to celebrate #4yearcancerversary #boardcertified #DisneyWorld #HakunaMatata

Since my last update, I have had many things to celebrate. First and foremost, I turned 4 (in cancer years) on December 17th! This year, we celebrated in Turks and Caicos (Avery’s choice!) and were able to get some much needed time away. As I reflect on the past 4 years, it’s been an incredible and unexpected journey. Initially there were a lot of ups and downs, but now it’s been much smoother and for that I’m grateful. I know there will be some rocky paths in the future (hopefully way in the future), but for now I’m happy to continue on the same treatment with minimal hiccups.

Another big thing to celebrate: CLEAR SCANS! I made my quarterly trek to Charlottesville to visit my oncologist after the New Year where I got the all clear. One of the things that this disease has best taught me can be summarized in one of my favorite quotes: Yesterday is history. Tomorrow is a mystery, but today is a gift! That is why it is called the present. Every visit makes me realize what a gift I’ve been given to have 3 months of worry-free living after each of these scans.

And living I have done! Since my last update, we had 4 holidays (Thanksgiving, Christmas, and New Years x2) and went on 3 trips. My in-laws moved to Richmond in 2021 and my parents came down so this holiday season was the first year in a long time that we didn’t have to make the arduous journey up I-95 to Northern Virginia to visit family. It always feels great to be able to celebrate another holiday season with loved ones.

In addition to our Turks and Caicos trip, I was able to celebrate two “firsts”. I went to my first NASCAR race at the Daytona 500 and to Disney World for the first time EVER! Disney World was every bit as magical as I had imagined, and even though it took 34 years, I’m glad I was able to share it with my daughter. It was incredible seeing her face light up from all of her favorite Disney princesses. Even better, it was the 50th year anniversary celebration – the world’s most MAGICAL celebration!

Perhaps the icing on top of the cake of all the celebrations, I took and PASSED the final part of the the American Board of Oral and Maxillofacial Surgery (ABOMS) certification exam. Talk about magical, I found out in Disney World that I passed my exam and officially became a board certified oral and facial surgeon!

I’m so fortunate and thankful to have been given the opportunity to experience all of these events. Four years ago, I would have never thought it was possible, but thanks to cancer research I’ve been given a second chance. I’m still crossing my fingers for a cure so I can continue to have these wonderful life experiences and achievements. Until then, I’m just going to keep enjoying the present.

THANKFUL FOR ANOTHER YEAR #happybirthdaytome #34yearsyoung #clearscans #bucketlist #makingMemories

As I celebrated yet another birthday (34 years young!) and our annual partnership with Wild Ginger RVA kicked off, I realized how long it has been since I last updated my blog. You know what they say: no news is good news. Since my last post, I’ve had 2 scans and both were clear!

It’s a bit surreal to think it’s possible, but as the years pass and the scans remain stable it has definitely become a reality that I can forget that I have cancer for the ~2 1/2 months following a scan and live a relatively normal life. After a year of being cooped up due to COVID, I have been fortunate enough to watch 5 friends get married, traveled on 3 trips, and performed countless surgeries all in the past 6 months.

It has been really nice to see people who I haven’t been able to see in many months (and in some cases – years) and show off my dance moves at all the COVID makeup weddings this year.

After a long year, it was amazing to be able to take my daughter on vacation (she now calls Mexico our “vacation home”)

and to check off a bucket list item with my beautiful wife in Greece.

Making up for lost time, we are not done with weddings and already planning for at least 4 trips in the next year. Cheers to a return to normalcy (or at least the new normal)!

In addition to fun, we also are continuing our advocacy for lung cancer. For the third year in a row, we are partnering with Wild Ginger to raise funds for lung cancer research. For any Richmonders or those passing through Richmond, stop by Wild Ginger to get the Tran Roll a.k.a. Lungevity Roll. A portion of each roll sold will be donated to fund ALK Positive lung cancer research. Remember, November is Lung Cancer Awareness month so stop in and get one today!

Livin’ life a quarter year at a time #alectinib #39months #boringisgood #burgerbach #givingback

I made my quarterly trek to Charlottesville earlier this month and everything remains stable! My scans look the same as they did the first time I got the good news over 3 years ago. I even talked to my oncologist, Dr. Hall, about how routine these appointments have gotten and that boring appointments are good appointments. I couldn’t ask for anything more and just pray the medication keeps responding this well indefinitely.

I also wanted to provide an update from my last post related to the partnership with Burger Bach to raise money for ALK Positive. Thanks to everyone who sacrificed their six-pack abs (don’t worry – summer is still 3 months away) to support lung cancer research, we were able to raise $1,117 to fund further advancements in ALK rearranged lung cancer research. We even received support from friends from Harrisonburg!

May be an image of James Hiter Jr and burger
Lung cancer survivor from Harrisonburg, VA at Burger Bach Charlottesville

I also wanted to sincerely thank Burger Bach for GIVING BACH and helping to support ALK Positive lung cancer patients from around the WORLD. From the bottom of our hearts, THANK YOU!

ALK Positive + Burger Bach = LIFE #smacattack

In partnership with Burger Bach, a local New Zealand inspired gastropub, we are working to raise money for ALK Positive during the entire month of March! For every S’Mac Attack sold during the month, $1 will go to help fund research for further advancement in cancer treatments. Support small business and a good cause this month and stop by a participating Burger Bach near you (Richmond – Short Pump and Midlothian (sorry no Carytown), Charlottesville, and Durham, NC)!

We had these for dinner the other night and let me tell you, these burgers are AMAZING! Between the juicy burger, delicious sauces, and cheesy mac, you can’t go wrong. Just thinking about it, I think we’re going to need another burger night this weekend 🙂