Friday, January 16, 2015
As I reflect on my surgery I am disappointed that I missed so many opportunities to catch the cancer before it caused my large intestine to rupture. My annual colonoscopy was delayed by a few months because I was switching gastroenterologists (strike ONE). I had an MRI scheduled to happen 5 days prior to the rupture that was cancelled because I tested positive for C-DIFF (strike TWO). I had the opportunity to be admitted to the hospital 2 days prior to the rupture (Friday), but my new gastro said that I must leave immediately in order to get to the hospital before she left for the weekend. Given that my wife was at work and I had two kids that wasn't an option (strike THREE!). If any one of these circumstances had been different, we would have likely found the tumor and had a planned surgery rather than an emergency ruptured bowel that spilled all kinds of filth and bacteria into my abdominal cavity (causing a level of pain that I didn't know existed). As hard as the surgeons tried to flush my abdomen, it's impossible to get all of bacteria cleaned out. As a result I spent two months fighting post-operative infections with IV antibiotics and multiple drains and countless CT scans & MRIs. During that time my doctors were focused entirely on the infections and the cancer continued to grow and spread quickly. By the time I started chemo on November 6th, the number of tumors in my liver had grown substantially and the size the existing tumors had doubled (based on a comparison with the original CTs/MRIs). My liver had 20+ tumors ("lesions") the largest of which was about the size of a baseball. Apparently, my cancer is very aggressive with regards to growth and spreading. The upside is that chemo drugs work best against cell that divide quickly and mine certainly seem to be doing that!
Once we had the post-op infections under control my wife and I went about interviewing oncologists and found an amazing doctor, Steven Szabo. He put me on a chemo regimen called FoxFol 5-FU + Avastin that required me to have a port installed in my chest to deliver the chemo drugs. Every other Monday I spend 7 hours in an infusion center getting the chemo drugs pumped into me and I leave with a pump that infuses me for 48 hours. I then go back in the following Wednesday to get the pump removed. The chemo symptoms have gotten worse over time. Some of them are well known like nausea and fatigue, but some are bizarre like the fact that coldness on my fingertips or in my mouth/throat feels like an electric shock (kinda like a 9-volt battery on your tongue). On January 7th, I had a PET scan that was compared against my baseline PET scan (taken prior to chemo) and we learned that my tumors are shrinking and that there has been no further spread of cancer to other parts of my body. They expect me to be on this chemo regimen for another 3 months or so before I transition to mostly oral chemo meds.
My current symptoms consist of the chemo side-effects mentioned above plus severe back pain caused by the liver tumors pressing on the nerves in my lower back. I've been on oxycodone for a couple months and it does a pretty good job of managing the pain usually, but takes a while to kick in once I realize I'm in pain and take one. I've also purchased a Tempurpedic adjustable bed (split king) that allows me to adjust my position to alleviate pain without waking my wife. For the first couple months after surgery I really struggled to eat. I didn't eat for 22 days before and after surgery and lost about 32 pounds (which I didn't have to spare) so I'm down to about 150 lbs. Eating more than a small snack resulted in sweating, nausea, and discomfort. However, over the past 3 weeks or so I've been able to eat regular sized meals and have gained back about 3 pounds! I'm on the "consume as many calories and as much food as possible" diet...which annoys everyone around me who is trying to lose or maintain their weight :)
For the last 18 years my career has been a huge part of my life and my self-identity. It provided a life that has taken us from Connecticut to Richmond to Charlottesville to NYC to Atlanta. I work for a relatively small software company called Pivotal that was spun out of VMware and EMC. I cannot say enough about how helpful and understanding they have been through this. I have learned more than I care to about employment law, social security disability, short/long term disability, HIPPA, and benefits. My employer continues to provide health insurance and long-term disability insurance during this extended absence (which they are not required to do by law). I cannot imagine how difficult this kind of experience must be for those who must endure crushing financial hardship along with the physical and emotional toll of cancer. I am incredibly fortunate.
I've had a bucket list that I created long before my cancer diagnosis which included taking my wife to Paris (check), skydiving (check), and many other things. I've added a bunch of travel lately. While I'm not sure that I'll be healthy enough to do everything on it, I've decided to plan it and adapt as necessary. Our first trip was to spend 9 days over Thanksgiving driving through Indiana visiting friends and family. I wanted to attend a Purdue football game this year (yes, I'm a glutton for punishment) and my wife was able to arrange for us to sit in the skybox during the game . She also managed to get us a ride on the Boilermaker Special train which included a ride around the stadium, then right through the gates to the south end-zone where we were escorted to the skybox. AWESOME! However, my kids expectations are now completely ruined because they now believe that's NORMAL :) After new years, the family headed for 3 days of fun at Disney World. I had to take a break each day after lunch while Kristen took the kids on a few rides without me, but overall it was fantastic. It turns out my kids (ages 6 & 9) are thrill ride fanatics! And with the Disney's FastPass+ system we spent less than one hour in line over the entire 3 day vacation. Really impressive since my childhood memories of Disney are littered with standing for hours on end in blazing heat for a 2-3 minute roller coaster ride. Already planned are trips to Detroit to see my brother, Indianapolis for the Boilermaker Ball, Winter Park for skiing, Las Vegas for just Kristen and I to get away, San Francisco with the kids, and finally Maui next summer with my cousin. I've even considered renting an RV for a pseudo-camping trip with the family (I have no interest in the type of camping that requires me sleeping on the ground in a tent covered in mosquitos). Needless to say, we're making the most of the time we have.
As you would expect, life has been quite different for me since the surgery and diagnosis. Without work, my days consist of doctor/chemo appointments, medical/disability administrivia, chores, naps (fatigue), and time with friends/family. Almost everyone is aware of my situation now, but every few weeks I have someone who is not on social media reach out with "OMG, I just found out!" When people actually see me for the first time they generally get a bit uncomfortable and there's a lot of awkward pauses as they search for words. I've gotten used to the awkwardness and try to show them that I'm the same guy they remember, only thinner and a bit less mobile. My closest friends/family have now gotten comfortable with the "gallows humor" that I often use these days. One of the positive benefits of my situation is that lots of things that used to really bother me, just don't matter much anymore. Whoever said "Don't sweat the small stuff. It's almost all small stuff" was exactly right.
I've thought a lot about death since my diagnosis. It's such a taboo subject that people are really uncomfortable talking about (especially with someone who is terminally ill because it's not just a hypothetical topic). Whenever I'm talking about estate planning, or my bucket list, or other aspects of planning for the inevitable I get a lot of well-intentioned "you never know, miracles happen everyday, god works in mysterious ways, you can't give up" comments. While I'm definitely not happy about my prognosis, I have accepted the reality that the 5-year survival rate for someone in my position is less than 6% with the average being about 2 years (my oncologist thinks that I can make it 3 years based on my response to chemo). That doesn't mean that I've "given up", it just means that I'm a pragmatist at heart and I consider every day since August 24th, 2014 to be "bonus time". That being said, some days are harder than others. It's a surreal feeling to know that you are approaching the finish line. I won't say that it doesn't make me sad, it does. Usually in the form of a few minutes of tears each day when I'm alone. But then I hear the giggle of one of my kids or the voice of my wife in the background and I smile and quickly realize that I don't have time to sulk or feel sorry for myself. Now is the time to live; Death will just have to wait it's damn turn ;)
Friday, October 3, 2014
It's so easy to get wrapped up in our day-to-day lives that you fail to recognize the impact that your life has had on those around you and thereby on your world. It's a shame that most people will never get the gift that I have received. Most of us will pass through life without realizing our own impact on the world. I'm lucky. It's a gift I will cherish for the rest of my days.
Monday, September 22, 2014
"Terminal". It's such a devastating word. One I hope you never hear.
I awoke momentarily in the ICU (intensive care unit) out of the narcotic induced haze and overheard a doctor in my room use the word "cancer". I was too loopy to see anything and in too much pain to respond in any way... but I heard it distinctly before I fell back into my narcotic induced sleep. It would be two days before anyone used that word in my presence again. It was a nurse who asked me the simple question "Have any of the doctors actually shared your diagnosis with you yet?" I responded that I had overheard the word cancer and she confirmed it for me. I asked "Terminal?" and she nodded.
While this is the 3rd time in my life I have been diagnosed with an incurable disease (Crohns & PSC previously), nothing could prepare me for the phrase "terminal Stage 4 metastatic colon cancer". We are certain that it has metastasized to the lymph nodes and we believe it has also metastasized to the liver as well. We cannot be 100% sure of this today because the surgeons were not able to get a liver sample before closing up my abdomen during my initial surgery (apparently they were worried I wouldn't make it beyond the 6 hours I was already in surgery). Our hope is that we can stop/slow it from metastasizing to the lungs (the 2nd favorite destination of colon cancer beyond the liver). We have found no evidence of lung involvement to date but, of course, cancer cells are too small to be seen so all we can do is hope.
An additional downside to the cancer diagnosis is that it makes me ineligible for a liver transplant if my PSC were to worsen. Many thanks to those who stepped up and volunteered to be a living donor for me, I cannot tell you how your generous offers touched me and my family (I am crying at the thought as I type this line). But it is not to be.
One of the few nice things about being ill the the outpouring of love and support that you receive (or at least that I've received) from my friends and family. Emails, cards, text messages, phone calls, unexpected visits, comments on Facebook/blogs/twitter. I read / listen-to every single one of them and while I cannot always reply, every one of them lifts my spirits and makes me realize how my life has touched others. I got one of the most heartwarming voicemails from someone I haven't worked with in several years just yesterday. I cried when I listened to it. It's been wonderful to have my parents so close (about 30 mins away) and I've gotten to see a lot of them both in the hospital and since. I talk to my brother in Michigan every week which certainly brightens my day. But most of the heavy lifting has rested on the shoulders of my amazing wife, Kristen. She is my wife, my home healthcare provider, and my savior at the moment. She is the strongest person I have ever met. I may not be lucky health-wise, but when it comes to choosing a spouse, I am truly the luckiest man alive.
With two young children at home (ages 6 & 9) Kristen and I had to decide what to share, with whom, and when. We definitely didn't want them to find out about my diagnosis and prognosis by overhearing a conversation or piecing things together. So we decided to be honest with them and sat them down last weekend and just told them everything as clearly yet concisely as possible. They were upset of course, but I've been amazed at how adaptable children are. We can now talk about it as a family without any hushed tones or raised eyebrows. It's difficult to know for sure, but I think it was the right choice for us.
As for work, I am fortunate to work for an employer (Pivotal) that provides life insurance, short-term and long-term disability insurance, and is generous on top of all that. I am not sure if I will return to work or not (or even whether I will be strong enough to have that option). I certainly gain a lot of my self worth and gain a lot of satisfaction from my work, so it could actually be theraputic for me. I'm currently on short-term disability insurance and will migrate to long-term disability when that runs out. I guess I will just have to wait and see whether returning to work is a real option for me.
Tuesday, August 26, 2014
A few of you may have heard that I have had a recent health scare. If you read my prior post in January you learned about my PSC diagnosis and the challenges of liver transplantation.
This months edition will dip back over 2 decades ago when I was diagnosed with Crohn's disease. In 1991 it was bit generally well known and there was no world wide web yet to learn about it. It's an inflammatory bowel disease that can range from mild to terrifying. Over the part few weeks I took that accelerated journey.
It started with a colangitis attack (liver infection) about 3 weeks back. I took a well of antibiotics (yes, finishing entire bottle). One of the dangers of antibiotics is a new infection that springs up right after the antibiotics stop...it s call "c diff" and it is incredibly dangerous. I developed a c diff infection but didn't realize it for over a week (was traveling in California). On Friday I got home to Atlanta and went to the doctor who confirmed her cdiff diagnosis over the weekend and got me started on new antibiotics. Unfortunately, they didn't work in time and on Sunday night my colon perforated spilling the contents off my bowls into my abdomen. On a pain scale of 1-10 this is a twelve. I couldn't breath and thought I might suffocate. It was 3 am and Kristen quickly got me to the e.r. where we waited in line (not patiently, but we waited). I finally saw a doctor about 60 -90 minutes later and was told I needed surgery immediately. Monday morning the removed my colon and have me a illeostomy bag that hangs from my abdomen. Today I managed to get internet access and get my breathing tube removed. It's still painful to talk much, but comments and email is welcome....but the single best thing you can do for me is fill this out.
Thank you and I will add health updates here so that you don't have to learn by word of mouth.
For those of you who dig scars here you go. The loop goes around my belly button.
Monday, January 27, 2014
About three years ago, I received a diagnosis called Primary Sclerosing Cholangitis (PSC) which is a rare liver disease (affecting 3 out of every 100,000 people in the U.S.) without a known cause or cure. The disease prevents the bile that’s produced in the liver from properly draining into the small intestine. Without proper drainage, the bile buildup causes stones and cirrhosis of the liver, which will ultimately require a liver transplant to survive. Given the serious nature of the condition, I decided to share this information only with my immediate family (obviously, that has now changed).
As you might imagine, this news came as quite a shock to me and my family. But, I was asymptomatic at the time, so it was easy to live in denial for a while. About 6-9 months later I was on a business retreat in the mountains of Colorado when I suddenly felt very ill. Instead of participating in the meeting I slept for about 18-20 hours straight. I had no idea at the time that I was having a cholangitis attack (liver infection) and that my life was in danger without medical attention. Luckily, my body was able to fight off the infection and I returned home none-the-wiser. About a year later I was on vacation with my family at the beach and I had another cholangitis attack, this time I found my way to the emergency room and spent a week in the hospital recovering with the help of antibiotics.
Proactive Monitoring & Therapy
I get pictures (MRCP) taken of my liver every so often by my heptologist to track the progression of my disease. A few months ago the pictures showed what appeared to be a lot of gall stones that had formed behind the strictures in my liver and my doctor was very surprised that I had not experienced more symptoms yet. He proposed that we insert a drainage tube through my ribs and into my liver that would help to drain out the bile and hopefully a lot of the gall stones. The tube would be taped to my side and i would come back to the hospital periodically over a period of 6 weeks where they would insert instruments into the tube and try to balloon strictures in my liver and remove gallstones.
On January 9th I checked into Emory Radiology for my procedure. When I came out of anesthesia I knew something was wrong. The amount of pain I was experiencing far exceeded what the doctors expected. After a couple of days in the hospital on narcotics I went home. Only to return 3 days later with uncontrollable pain. They did an MRI but could not determine the reason for the excessive pain. I was put on a narcotics cocktail of 3 drugs in an effort to control the pain. We then installed a 2nd liver drain in my abdomen with the hope that it might be less painful and we might be able to remove the 1st one. No such luck. Finally, we switched to plan B and used the drains to help guide an endoscope (tube that goes down your throat) into my primary bile duct and install a stent to improve the flow of bile from the liver into the small intestine. Once they installed the stent the doctors were able to remove the drains altogether (yippee). Finally pain free, I was able to go home after a 5 day stay in the hospital.
Unfortunately, a few days later I developed a fever that progressed over the next 3-4 days until I was told to return to the hospital for treatment of a probable liver infection (a clear risk of the procedure, but not one that you expect to happen). So I’ve been hospitalized for the 3rd time in three weeks, this time with a cocktail of IV antibiotics to fight the liver infection. After 5 more days in the hospital it looks like I might be able to finally go home (fever free) with a PICC line installed so that I can administer my own IV antibiotics for the next 4-6 weeks. I’m writing this from my hospital room right now as I await the doctor’s decision.
The Road Ahead
This will not be the last time I am hospitalized for PSC. I know this. But my hope is that we were able to clear away enough gallstones and sludge from my liver and balloon enough strictures during the procedures and the painful time that the drains were in that we have extended the life of my liver. Also, since I now have a stent inside my primary bile duct we should be able to conduct future therapies endoscopically (down my throat) rather than having to punch a new hole in me.
PSC is a strange disease. Some people need a liver transplant within 12 months of diagnosis and others spend 20 years or more with their original liver. There’s just so much variance that statistics aren’t much help. So, I will go on about my daily life until the next time that PSC decides that it’s time to remind me of it’s presence and we will deal with the challenges as they come.
As word of my hospitalization spread I was asked continuously “what can I do to help?”. And I never knew what to tell them until now. You can be a hero and become an organ donor online right now, before you close your web browser. It takes 5 minutes. There are over 35,000 people waiting for a kidney and over 10,000 people waiting on a liver this very moment. On average, 18 people die every day waiting for an organ transplant. Take the 5 minutes now. Click a mouse, save a life, be a hero. Your organs aren’t much good to you once you’ve passed, but they are a source of hope for thousands who sit waiting for that miracle phone call “we have your new liver/heart/lung/kidney/etc" : http://organdonor.gov/becomingdonor/stateregistries.html
The life you save could be mine.
Tuesday, December 3, 2013
After many hours of reading forum posts I stumbled across a blogpost that described exactly what I was looking for. I realized that I could emulate all of the arcade game systems as well as all of the home video game consoles from my youth by just installing a laptop into an arcade cabinet and connecting a specialized controller board (with two joysticks, buttons, and a rollerball) with a USB cable. This way, if anything goes wrong with the unit, I can fix it myself. In the blogpost the author refers to an Xtension Arcade Cabinet that is essentially a cabinet kit that is all pre-cut and pre-drilled so that all you have to do is provide the computer hardware & software. I filled out the online order form and was just about to click the payment button when I hesitated at the shipping cost. Out of curiosity I clicked on the "About Us" link on the manufacturer's website and realized that they are less than 30 minutes away from me. I emailed the company and asked if I could come pickup the order to save the shipping cost and they assured me that it would be no problem. They even had display models so that I could try out different sizes and options before deciding which unit to purchase.
While I was looking at the display models I opted to add a few upgrades to my original purchase. First, I purchased a slightly larger cabinet than I had originally intended because I wanted plenty of room at the console for two player gaming. It cost about $100 more but it also included a backlit header (which doesn't seem like a big difference in the website pictures, but looks so much cooler in person) which is a $50 upgrade when buying the smaller model. Next, I noticed that some of the cabinets had real working coinslots in them. I opted for the coinslots instead of the simple flat black front ( purchased separately from xgaming.com). The actual board that houses the joysticks/buttons/trackball called a Tankstick had to be purchased separately as well. It is essentially a keyboard that connects to your computer via USB or PS/2 ports. Finally, I really loved the custom graphics on the display models so I purchased graphics for the header and a matching graphic overlay for the joystick/controller board. I had some old LCD monitors that I had intended to use in the cabinet, but the larger (XL) cabinet holds a 27" monitor (instead of a 24") so I purchased this new 27" monitor on Amazon. The cabinet requires a monitor with power and inputs on the bottom because of the mounting system. The only thing left to find was a computer to actually power the unit. My father had purchased a used IBM Thinkpad T42 for $200 several years ago and the display was cracked so he generously donated the laptop to the project.
The problem with using a PC and emulators for a game cabinet is the end-user experience. Seeing a Windows desktop as you switch games or emulators requires you to suspend the fantasy that this is an actual arcade machine. Enter Maximus Arcade. This simple piece of software provides a slick user interface that allows you to switch between different game emulators (Nintendo, Sega, Atari, MAME, etc) and then select a specific game (called ROMs) to play within that emulator. All without ever touching a keyboard or using a mouse. The simplicity of this user gameplay experience comes at the cost of many many hours of configuration and troubleshooting. Maximus Arcade does not include any emulators, so each emulator must be located, downloaded, configured, and then integrated into Maximus Arcade individually. Easier said than done. While this isn't necessarily the fault of Maximus Arcade (afterall, there are dozens of emulators to integrate with), but the documentation could be MUCH better. I configured and integrated the following emulators : NES, Super NES, N64, Atari 2600, and MAME. But I must admit, that once it was finished, the software worked exceptionally well.
|$0||free laptop **|
* actual shipping cost for everything would have been $110 if I had not picked it up cabinet myself
** obviously, you may not have a free spare computer so this may be a significant cost
The Lessons Learned
- The Xtension cabinet saved me so much time/effort vs building from scratch or rehabbing an old cabinet. Not to mention, I met the guy (Wayne) who runs that small business and he's extremely nice and helpful. Highly recommended!
- There are speaker slots up behind the backlit header but no instructions. There is a black piece of wood that covers those speaker slots included in the cabinet kit. My only conclusion was that the speaker slots were purely for decoration.
- The florescent light behind the header cannot be removed/replaced without disassembling the cabinet. In order to reduce the frequency of this, go buy an extra powerstrip with an on/off switch so you can turn the backlight off without powering down the PC and mount it to the back of the cabinet.
- While the Tankstick is defaulted to use default MAME emulator keystrokes with the NUMLOCK key ON, I have found that this causes some games to not exit properly. I had to remove NUMLOCK and remap my games to use the Tankstick
- The Tankstick is a really nice keyboard emulator, but don't bother trying to custom program it. The moment you turn off the PC the keys all revert to their default values until you lift the Tankstick out of the cabinet to press a hidden button (poor design). Map all of your emulators to the Tankstick's default key mappings
- The coinslot comes with no instructions. There is a single diagram on the manufacturer website that is not very helpful. You must remove the bottom panel of the tankstick (6 screws) to attach the cords from the coinslot. Trial & error to determine which cable goes where. Coinslot also does not come with anything to catch the quarters!
- Google is your friend. When you come across weird idiosyncrasies that don't make sense, start trolling the message boards comment threads for solutions (like the NUMLOCK issue above).
- Download the emulators and the game ROMs together from a torrent server. Otherwise you will find yourself spending HOURS trying to figure out the nuances of how to get your ROMS to be recognized by the specific version of the emulator you are using. I tried five different MAME emulators before getting one that worked reliably. (note: legally speaking you must pay for all ROMs/games that you use. I will leave that exercise to you. I am simply pointing out the simplest method of configuring those ROMs/games to work with your emulator of choice.)
- Mapping emulator buttons is kind of a pain. Decide which emulators you want to include. Research the buttons on the original controllers. Decide how to provide the best consistency for the Tankstick and write them on the diagrams included in the Tankstick manual.
- Install and configure each emulator independently before trying to integrate it into Maximus Arcade.
- Configure each emulator to "Close all additional processes started during launch" in the "Configuration" tab of Maximus Arcade's "Preferences" interface (CTRL-P). This ensures that exits happen cleanly.
- To configure MAME from within a game hit the TAB key on the keyboard and follow the menus.
- Plan to devote dozens of hours to this project over a multi-week period if you are not already very familiar with emulators.
note: The coinslot was on backorder when I first wrote this, so you can see a sticker in place of the coinslot in some of the pics. But here's a pick with the completely functional coinslot installed (only relevant for MAME):
This was a labor of love for me, but it was definitely worth both the time and the money spent. Not only do I get to play these classic games, but I get to share them with my own children. I even got my wife (not much of a gamer outside of Halo) hooked on the classic Tapper arcade game. If you are a nostalgic child of the 80s like me, and you have a bit of spare cash and some free time... I highly recommend taking the plunge.
Wednesday, February 11, 2009
I remember seeing this approach when we took my firstborn to get his baby pictures. They take over a hundred digital pictures of your kid and then display them on a big flatscreen and you are supposed to pick five. Getting down to about 10 is pretty easy (eyes closed, screaming, etc), but choosing those final 5 from the 10 is actually really difficult. So they pull up just two pictures at a time and ask you to choose between the two. They repeat this many times until your 5 become obvious. The efficiency of this approach is brilliant because the faster the parents choose, the more customers the studio can serve.
While the photo studio example is purely binary, a more sophisticated variant allows me to specify degree (e.g. I like this one twice as much as that one). This is overkill for some use-cases but can be valuable in more complex situations. I found some tools to enable this, but they required me to manually compute the score for each of the elements manually. Being a techie I found this to be just silly.
I built a spreadsheet which automatically calculate the scores for each element. Each element is listed down the left-hand side and repeated along the top. The bottom triangle of the grid is blanked out to avoid duplicate comparisons.
When the element on the left is better than the element on top you enter a positive number in the grid. When the element on top is better you enter a negative number. You could use the same spreadsheet to do simple binary comparisons just using the values one and negative one. If you feel that the comparison is a tie just enter zero. The scores for each element are displayed on the far left. Once you have completed scoring just sort the spreadsheet by the score.
If you'd like to try it for yourself you can download my spreadsheet here.