Balancing personal and professional ambition with a NED (no evidence of disease) status is proving to be tougher than I expected, and it has affected a larger part of my life than I expected.Read More
Several months ago, mid treatment, I came up with a list of non cancer projects to distract me. One of them was to record a song for my kids. Well, months later, I can finally tick that particular project off the list.Read More
Got my first surveillance scan results and they were good. Unfortunately many people around the world - some friends - have not been getting such good results. I also know I am just at the beginning of the long and dangerous road of recurrence. Cancer just sucks.Read More
I’ve been very lucky on financial front with respect to my cancer journey, but the monetary cost of cancer is still pretty high. It’s a question I often get so I thought I’d share some of the details here.Read More
After 10 months of cancer treatment a good PET scan has meant an end, for now. Now my doctors are telling me to just “do what I normally do” i.e. get back to normal life…and come back to see them for another scan in 6 months. Which such a big cloud hanging over you, how do you just “get back to normal”.Read More
There are so many people to thank. Too many in fact. However just before I complete my last major surgery in my 1st line treatment journey I thought it was a good time to pause and thank a few key people.Read More
I've completed 1st line treatment and my next PET scan is booked for April 10th. I'd love to say I'm completely relaxed about it ready for any outcome but I'd be lying. I have major scanxiety.Read More
Completing my legacy video library was one of my 'non-cancer' projects so I felt the need to provide an update on my progress. However I've since been asked a couple of times for advice on how to set up these collections by other potentially terminal patients with kids, so I figured I'd turn this into more of a guide for others.Read More
Had post-surgery follow up meetings with surgeon and oncologist yesterday. I don't think we were prepared for them being so depressing. The pathology results are back and they weren't great (after surgery all the resected tissue - colon, liver and lymph nodes - was sent for testing).
The report is 7 pages long and there is a separate genetic screening report. I might do a separate post with the technical detail for those suffering from a similar diagnosis that I know are reading my blog...because I'm going need some advice on chemo and a few other points.
But here are the highlights:
- The good news
- The primary tumor (colon) showed a good response to the pre-surgery treatments.
- The surgery appears to have removed all tumors successfully.
- The bad news
- The primary tumor was treated with both radiation and chemo while the secondary tumors in the liver couldn't be treated with radiation, so we were relying on chemotherapy there. The pathology report showed that the liver tumors were barely impacted by the chemotherapy, which suggests that all of the pre-surgery treatment impact came from the radiation, not from chemotherapy. This is concerning because it suggests that my cancer is not responsive to the chemo drugs I was on (Oxaliplatin and Xeloda), despite being on an extremely high dosage. The reason this is so concerning is that we will be relying on chemotherapy to kill off any residual metastatic cancer cells. The next point makes this doubly concerning.
- They removed 37 lymph nodes in the surgery (that is a lot of nodes to remove - lets try not to think about the long term implications of that). Of these 9 were malignant. To put this in context, when they grade the severity of a cancer one measure they use is the number of impacted lymph nodes - 1 node, 2 nodes etc - but that scale stops at 7 i.e. anything more than 7 impacted nodes is considered in the worst category of spread. This, along with the liver metastasis, suggests I probably have a lot of cancer cells left in my body despite the actual tumors being removed. The original plan was to attack this with a second round of "clean up" chemo, but now everyone is questioning the efficacy of this and the concern is that it's just a matter of time before those 'wild' cancer cells find a new home and spark the growth of a new tumor, which may well turn out to be inoperable or untreatable, depending on where it is.
- The plan from here...
- My oncologist is considering adding another chemo drug to my cocktail (Avastin but Panitumumab or Cetuximab are also being discussed, however oncologist is concerned about side effects of the latter two). Previously he'd thought all I would need was another 3 month 'clean up' cycle on my existing cocktail, but now there is talk of 6 months of additional chemo.
- Because the veins in my arms have retreated due to the initial chemo cycles (and they weren't great to begin with), I need to have a port inserted.
- I also need a procedure to remove the caval filter which was inserted after my pulmonary embolisms to mitigate clotting risk during my major surgery.
- All this new shit starts in January, so I have around 10 days of "normal life" before then. I'm trying to think of something awesome to do in the next 10 days.
Given the relatively bad news from the pathology report I'm also reconsidering several alternative / complimentary treatment options that I'd previously parked pending the conclusion of first line treatment. I'm planning on getting a Curematch (USA) report done on my chemo options to augment my oncologist's own recommendations and I'm looking into the Care Oncology (London) complimentary drug regime. I'm also revisiting diet and supplements. Basically I'm doing whatever I can to stop this cancer spreading because suddenly chemo sounds like it's not going to be much help.
I'll probably have other PET CT scan in February / March to see whether the cancer is still present or, worse, spread post-surgery. Dreading that scan.
The shock of yesterday has also reminded me that I still have work to do on my track 2 planning, so that is part of what I'll be doing in the New Year, because suddenly the odds of track 2 being our reality seem a little firmer. I had been starting to think about a plan to return to normal life - work etc - but now I just don't know how think about this again given all the additional treatment and the associated uncertainty.
Cancer is a bastard.
Ok, so the major surgery is behind me. One liver resection. One colon resection. One pelvic dissection. I have a scar that runs all the way from my breast bone to my pubic bone. It's definitely a relief to have it done and all three of my surgeons seemed pretty happy with the way it went. I'll know more once all the pathology comes back. I spent 11 days in hospital. It was on track to be a shorter stay but then I took a bit of a bad turn which then took a while to get over. I got home last week but sadly I'm back in hospital now due to some complications. Oh it has been such a fun week, I have to share, as usual probably too much...
Just a couple of days after getting home I started to notice some pain when I finished peeing. It got bad enough that I called the hospital after a couple of days and based on my symptoms (and a prior positive urine culture) it was determined that I probably had a urinary tract infection - pretty common after a hospital stay with a catheter. So I went onto some antibiotics and was told it should start to clear up within 48 hours. After another 3 days the pain was only getting worse and I was getting less and less pee out every time I visited the toilet. The hospital asked me to come back in for one night so they could run some tests - blood, urine etc. They were concerned that I might have an infection that could get out of control or that it might be otherwise affecting my recovery from the surgery. All the blood work looked good so I was discharged the next day but put on an additional antibiotic and the dosage of my other one increased. The plan was to wait for the result of a new urine culture to confirm exactly what the infection was. I went home on Saturday morning and we expected the result on the Monday.
Over the weekend the peeing pain just got worse and worse despite all the powerful antibiotics. To be clear, it was so damn painful to pee that I would get nervous when I felt the need coming on. My routine was to sit down for the 1st part of the pee which was generally less painful. Then for the second half, which was always much more painful I'd stand up and put one foot on the toilet bowl - because for some reason this provided some relief and because standing made it easy to breathe through the pain and brace myself. I joked to some friends that if anyone walked in on me in the bathroom I would have looked hilarious - one leg up and heavy breathing.
On Monday the culture results came back and they were negative i.e. I had no infection. Cultures aren't 100% reliable but the result showed my white cells were also totally inconsistent with infection. I was also getting desperate. The pain was persisting between pees now such that it was painful to even walk and it had got so bad that I actually wasn't able to pass urine anymore...at all. While I'd been in hospital my liver surgeon had introduced me to the head of urology "just in case" and he'd suggested that if the infection treatment didn't resolve my issue I should give him a call. So I set up an appointment for the next day and took a load of painkillers to get me through that night.
When I went in for the appointment on Tuesday I was very, very sore. The urology specialist did an ultrasound bladder scan and found a large volume of liquid. The conclusion was that for whatever reason - perhaps nerve damage from the surgery - I was unable to pass enough urine and the retention was causing the pain. They decided I urgently needed a catheter. I've never had a catheter inserted while I'm awake and I hope I never have to do it again. Having anesthetic jelly injected into your penis, and then a tube pushed down your penis into your bladder is not a joyous experience.
And then something strange happened. They were expecting a rush of urine to flow into the catheter but instead hardly anything came out. The new theory was that something else outside my bladder was causing the problem, but for that I'd need more testing. So...cue another hospital admission, more blood tests and yet another CT scan.
The CT scan revealed that I had a large fluid "collection" sitting right next to my bladder and it had grown to the point that so much pressure was being applied to my bladder that I could no longer use it. The ultrasound bladder scan was fooled and was actually picking up the liquid content of the "collection" and not my bladder. The only solution was to drain this fluid. A couple of hours later I'm prepped for surgery and rolled down to theater. I ask why we passed through the anesthetic bay straight into the theatre and the nurse tells me I'll only have light sedation for the procedure - a procedure where they stick a large wire into your abdomen and then a tube to suck out the fluid. Given my fear off all things medical and needles this causes me a mild panic attack but at this point the pain is so bad I'm willing to accept anything that will make it go away. So I lie back and think of Christmas. Luckily it turns out sedation with Fentanyl is pretty damn good and I barely remember the whole thing happening.
The impact was immediate. They removed about 200ml of fluid, which turned out to be blood (technically making this "collection" a hematoma), and the pressure reduction allowed me to pee normally and with much less pain almost right away. I've been sitting in hospital for the 48 hours with a drain to remove more of this fluid but that was removed this morning and I'm hoping that I'll be discharged later today. There is no guarantee that the hematoma won't just grow again and require drainage again, but my doctors think this is unlikely. Fingers crossed, but at least now we know what the problem is.
Next week I meet the oncologist to get my plan for the next rounds of chemo. I'm hoping I get a bit more of a break before it starts because the thought of starting chemo again right now fills me with dread. But such is the cancer game that we must play :)
So this will be my last post before the big Surgery tomorrow (Nov 23). Over the weekend I caught up with lots of friends (thanks to everyone who made it to our Thanksgiving BBQ) and the occasion reminded me of one question that I keep being asked: "why you?" i.e. why did you get stage 4 colon cancer at the age of 35.
Good question, and obviously it's a question I've been thinking a lot about since I was diagnosed. It's the first question I asked my doctors when I met them and their response has been pretty consistent. They have all told me to just not think about it. Here's why. In some cases the cause of cancer is pretty obvious e.g lung cancer often (but definitely not always) caused by smoking, Mesothelioma generally traced back to asbestos exposure etc. However in most cases it's impossible to know. Modern medicine knows there are risk factors for certain cancers - genetics, obesity, diet etc - but it's generally impossible for a doctor to answer the "why you" question with any degree of precision.
Despite the lack of a clear cut medical response, there is a natural desire to keep pushing for an answer to this question. For one thing, I really want to know how I can stop the cancer coming back if I'm lucky enough to survive this initial onslaught. So for this reason I've kept reading and I kept asking.
Here are a few of my "findings" on the "risk factors":
- Obesity - Now anyone that knows me knows that I've been, ummm, a little on the heavy side from time to time. Over the last 4 years or so I've been particularly bad. I had the whole dad body thing going on. A combination of kids at home and too many hours at work limiting free exercise time, working at Google (3 ridiculously good free hot meals a day), and exposure to "American eating" for 4 years (portion sizes, sugar in everything etc) all combined to lift me to my heaviest weight ever. So naturally, when I was diagnosed I thought my weight might be the cause. My doctors said this was unlikely. They felt I wasn't "obese" by the standard that would be a disease factor, and my weight hadn't been an issue for an extended period. Nonetheless, I personally feel being overweight must have been a factor and this has been a wake up call for me. No more excuses for being even a little overweight. Luckily cancer treatment is the ultimate weight loss program (at least for me). I'm down 12kg already and expect to lose quite a lot more post-surgery.
- Diet - There is also the question of what you eat, but here again I don't seem to have a high risk factor. Do I eat some unhealthy stuff ? Sure ! I live for the perfect pain aux raisin (I can share my judging criteria for this wonderful class of pastry if anyone is interested). However I'm also a man who makes his own muesli (Granola for you American folk) and compared to the average family we eat pretty healthy (organic where possible, minimal red & processed meat etc). But here again Cancer has been a wake up call to do even more and so we've moved increasingly to a plant-based diet complimented by fish and even less red meat.
- Stress - This is something I've reflected on quite a bit. I never considered myself "stressed", probably because my reference point is the stereotypical borderline suicidal overworked Wall Street executive, and by that measure I'm doing just fine. However in hindsight I realize I have been pretty stressed. When I first arrived in the US my role at Google was, ahhh, challenging. I walked into a total mess with a lot of important people applying pressure for quick resolution and no clear path forward. For about 6 months I was extremely stressed. In addition to that specific period I have a general on-going issue with imposter syndrome, which is heightened at Google where you're surrounded by A-type folk who seemingly all went to Harvard or Oxford - this means I operate with a higher than average baseline stress level. So, who knows what role this all played, but again I now know I need to manage stress extremely carefully and this is something I'm thinking a lot about when I contemplate my return to work.
- Environmental exposures - I've done a lot of reading recently about how modern post World War II society has contaminated almost every aspect of our lives with chemicals - our food, our homes, our furniture, our water, cosmetics, cleaning products etc. Frankly, the more I learn the more horrified I am by what governments have permitted private industrial companies to pump into our food in particular. I think in the future, as medicine learns more about cancer, epidemiologists will almost certainly confirm a link between the alarming growth in the incidence of cancer and the tide of chemicals we've introduced into our lives. However until then this is another dead end in the search for a clear answer to the cause of my diagnosis. Nonetheless I plan to be much more vigilant about the products we allow into our home, and the products we use to build our next home.
- Genetics - There is a ton of research happening in this space. I have no family history of this cancer but based on a 23andme DNA report I did several years ago (before 23andme were banned by the FDA from providing health risk reports), I do have a slightly higher genetic risk for colorectal cancer. After my surgery tomorrow my tumors will undergo a lot more genetic testing for what are called 'biomarkers'. There is a chance that they'll discover that I have something like Lynch Syndrome (I really hope not because this would be significant for my kids), but until then I have no reason to think my genes are the direct cause of me getting this cancer so early in my life.
In addition to these very well established risk factors, not a week goes by where I don't read about another potential cause of cancer being unearthed by some "study". Here's just a sample:
- Personality type - There is a whole body of research on 'Type C' personalities, essentially personality types that are cancer prone. I've reviewed some of this literature and it's a bit like reading a horoscope in that I think anyone could relate to some of the traits researchers have linked to increased cancer risk.
- Tattoos - I have a tattoo so this one got my attention. A study has suggested a possible link between tattoo ink and cancer later in life. Who knows but seems like a long-shot, at least in my case.
- Processed meat - This one seems pretty well confirmed now.
Incidentally, if anyone is interested in the latest information on cancer causes and how you can prevent cancer (including recommends for specific cancers) I think the best evidence-based resource is the American Institute for Cancer Research.
One final thing I should mention is that there is an alarming increase in the number of younger people presenting with late stage colorectal cancers, enough to be causing serious concern in US medical circles. I suspect Australia and New Zealand will follow soon given their very similar rates of this cancer. Both the Washington Post and the New York Times have written about this recently. It's a bit of a mystery. I've joked that in 5 years they'll probably discover that eating a particular type of biscuit or drinking a particular beer was the cause - you know, something horrifyingly specific and avoidable. But in reality that's highly unlikely, it seems nothing is ever that clear cut in the world of cancer.