Pathology is in...and it's not great

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. 

 

 

 

 

A few complications

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 :) 

 

The "Why Me?" Question

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. 

 

The Surgery Low down

Wow. This cancer business brings plenty of surprises. Today we had a session with the surgeon (well, one of the three) to be properly briefed on the surgery next week. I'd been thinking of this as a formality as we already knew the basic outline of the surgery plan. Instead there were a few curveballs which came as a bit of a surprise. This surgeon is a kind soul and said we just couldn't have had this conversation earlier i.e. I needed to be eased into it, and perhaps too much time to ruminate on it might not have been a good thing. 

So, here are the highlights, with all my usual frankness: 

  • It won't be a laparoscopic (key hole) surgery after-all. They've decided they need "full access" to do what they need to do. So it's a conventional open surgery. Guess the upside is a much more impressive scar ???
  • Because of the position of my tumour and the collateral tissue damage caused by the radiotherapy this will be an "ultra low anterior resection" surgery. In lay terms they need to take not only a chunk of my colon but also a chunk of my rectum. Sorry, if you're like me the word rectum just makes me squirm. This makes me a prime candidate for "Low Anterior Resection Syndrome" (LARS). The implications of LARS can range from a little bowel irritation to total fecal incontinence. Mmmm, yes.  I'm sure there is a great joke here but right now it's way too soon. 
  • I will need a temporary ileostomy (a poo bag with a direct entry to my abdomen) for 3 months and then another surgery to reverse this...and use my new man-made rectum instead ;)
  • And, perhaps the biggest surprise to me today, because the cancer has spread to the lymph nodes on my left side they are basically going to evacuate my pelvis on the left side - removing the whole lymphatic system and the left side nerves that control urinary and sexual function. Apparently everything can theoretically function with just the nerves on the right side but I've been told to prepare myself for some degree of post operative dysfunction. 
  • The surgery will probably take 5-6 hours just for the colorectal component and several hours more if they do the liver. We discovered today that it's highly likely they won't do the liver resection in the same surgery, which I'd previously thought had been decided. Apparently this will need to be decided on the day based on: (1) how well my body copes with the colorectal surgery and (2) logistical coordination with the liver surgeon. 
  • Oh, and I was told today that the skinnier I am the better it is for the surgeons. I've already dropped 12 kilos but now there is a fasting race to loose another 5kg before next Thursday. 

I kind of knew some of this already but some of the new details, combined with having it all laid out bare, left me more than a little shell shocked to be honest. In my surgeon's own words, "life will not be the same after this". That hadn't really sunk in until today. Suddenly I feel like a total idiot for complaining about radiation and chemo side effects. They now seem pretty inconsequential relative to the lasting impact of this surgery. 

I'm also seriously thinking about life with LARS. It's impossible to know how badly I'll be affected until it's all done. I might be lucky, but I'm wondering if I should just ask for a permanent colostomy bag and forgo (1) the additional reversal surgery and (2) all the potential quality of life implications. Will think about this over the next few days. 

One additional update, after a session with the oncologist yesterday, is that I'll have a 2 week break after the surgery and then they want me back on chemo for another 4 cycles, which translates to around 3 months. Good news is that if all goes well with the surgery i.e. they get all the cancer out, there is no plan for "maintenance chemo" (some stage 4 folks are basically on chemo for life). 

Heavy stuff, and sorry if I'm way over-sharing. I think being open about the full extent of this is healthy for everyone, and it's certainly helpful in a cathartic sort of way for me. 

Today, more than any other so far, I'm wondering what life is going to be like after all this...if I get the 'all clear'. It's suddenly hit me that it really isn't going to be the same. I just don't know to what extent. Am I going to be capable of my old job at Google ? Will I be able to go camping with the kids ? Can I swim at the beach ? I'm sure the answer to all these questions is 'yes', but now I know there will definitely be a new set of limitations in life, and I guess that's a little scary. But hey, I have no choice if I want to live, which kind of makes this easier :) 

 

 

So now I have clots in my lungs. Seriously ?

So, wow, it’s been an interesting week.

Over the weekend I started to notice a niggling chest pain - nothing major, just a little spasm when I rolled over in bed. I had my MRI progress scan on Monday morning and the pain was enough to cause me some issues holding my breath during the MRI (more on those results later) - but still nothing I'd call alarming. 

After MRI I came home and got right into the bath (because so far in my treatment a hot bath has been a magical cure, or at least a great calming agent, for many of my ailments). I sat in that bath for 8 hours because every time the water cooled down my chest hurt a little bit more. When Madé checked on me in the evening she threatened to call an ambulance - maybe it was the combination of shallow breathing...and needing hot water to not be in real pain. I resisted going but she may well have saved my life by forcing me - like literally (I was proposing to sleep in the bath that night).

I should say that at this point I REALLY didn’t want to go to emergency, partly because of all the tests I knew they’d run (i.e needles) but mainly because I’d convinced myself that what I was experiencing was because my lungs were full of cancer and we were going to rock up at ER and they were going to tell me it’s all over.

Anyway...we we drove to the nearest ER (San - local private hospital). Despite saying it wouldn't be a problem I couldn't even walk from the car to the entrance - Madé had to wheelchair me in. To cut a long story short (bloodwork, X-Rays, CTs etc) it turned out I have two clots - one in each lung. Otherwise known as pulmonary embolisms. I’m told people die from these regularly. Apparently having Cancer makes you high risk for these because Cancer actually makes your blood clot more. Who knew Cancer came with all these "add on" benefits ? I’d also been fairly immobile a couple of weeks prior because of my chemo side effect feet issue (burning so much I couldn't walk - you should see how gross it looks now) and not moving much can also spur clots - hence the inflight warnings to passengers. 

Next day I was transferred to Macquarie - my primary treatment hospital - by ambulance (kind of embarrassing but they needed to be able to deliver pain killers because at that point it was so painful to breath) ….and I’ve been there ever since, and I’m not sure how long I’ll be here for.

They are injecting me twice daily in my stomach with a powerful blood thinner (oh and I have to learn to inject this myself before I can leave as I’ll need to do this for several months - I have no f@^#n idea how I’m going to do this). It gets better. While this shouldn’t affect my surgery dates I’ll probably need to have a “filter” installed in my Vena Cava - the main vein linking your torso to you lower body, to catch any other clots during surgery as a precaution, because obviously you can’t be on blood thinners when you’re operated on. Apparently it looks like a Shuttlecock, and I have to be awake during the procedure to place it. Yes...I am crapping myself about this. My lungs are also both partially collapsed - just a small area at the bottom - but this is high risk for infection so I’m on IV antibiotics (took them 5 goes to get that needle in a couple of hours ago).

I’ve also learned a bit more about my liver surgery. Sounding more likely that this will be separate to the colon surgery in November and will be open, not laparoscopic like the planned colon surgery (although there is still a scenario where that might change too). They need to make a large incision to actually turn the liver over so they can get at one of the two tumours which is more internal to the liver and in an awkward position - the other one is pretty accessible and could have been done laparoscopically if it was the only one.

So yeah, it’s been a tough week and it’s not quite over yet. My room in the ward also happens to be a few doors away from a woman in her final hours / days of life and no matter how hard I try, I can’t tune out of all conservations between relatives happening loudly and passionately in the corridor (although some interesting insights for my own Track 2 planning). 

One piece of positive news is that my primary and secondary tumors appear to be responding to the radiation and chemotherapy. Long story but the official report from the scan on Monday still isn’t out but all my surgeons have looked at the images and tell me it looks good. So, woohooo, on one important front - although again, the OFFICIAL report isn't done yet. 

It still seems so totally surreal that this is all happening to me. From the guy that was almost never sick (and had no major illnesses ever), I’ve become a walking list of numerous co-morbidities (the medical term used to describe all the things you’re suffering from that could potentially kill you). When I used to fill out medical waiting room forms I just used to skim all the "do you have a history of..." questions and tick no on absolutely everything. Now I have to read them very carefully because much of the stuff on the list applies to me, all in the space of 3 months ! 

On the logistical front I still get a lot of pings on FB messenger & Hangouts, emails etc etc asking me for the latest news and I think it’s because I’m not a very prolific blog poster (it takes some effort which I don’t always have the energy for, or I just can't think of enough to fill a whole blog post). That means friends and family are in the dark. So, I’m caving and setting up a private, moderated FB group - only for people I know i.e. friends, family, colleagues - where it will be easier to post small updates from my mobile etc. When I do have something chunky to say I’ll continue to post it on my blog.

Quick Update - Surgery Date Pencilled In

So I'm realizing that if I don't post anything for a while I start to get a lot of "what's up" emails. Thanks for caring so much friends and family and apologies for being incommunicado! 

The last several weeks have been a little rough frankly. I picked up a virus from the kids which knocked me pretty badly. At one point fever took my temp above the magic 38 degrees but I ignored doctors orders and stayed away from ER after my last bad ER experience. Luckily the fever passed by itself. Then the hand / foot syndrome got worse, but to a whole new level. I could barely walk on my feet or open a bottle with my hands. 

Bright spot was our holiday at Hyams Beach, we splashed out a little on an amazing house right on the beach (because I can't get very far from the house at the moment). 

 Our view from the pool at Hyams Beach. 

Our view from the pool at Hyams Beach. 

Had a another tricky chemo infusion a couple of days ago after getting back from our Hyams Beach Holiday. Took four attempts for them to find a vein they could use. Luckily I managed not to pass out this time.

I guess the big development was meeting with my colon surgeon yesterday - Prof John Cartmill. Generally Madé and I found the meeting to be a major downer. I think we'd not grasped the enormity of the surgery. We discussed long term implications - I'm still too scared to Google "Anterior Resection Syndrome" - and all the variables still at play (for example the real possibility that cancer has leached further into my tissue beyond the bowel), which for me served as a reality check on my odds of surviving this thing and reminded me to stay focussed on my Track 2 preparations.  

Anyway, key tactical developments: 

  • CT scan scheduled for Monday 24th to check for growth / shrinkage of tumors after chemo and radiation (very scared about this)
  • Surgery planning procedure under general anesthetic booked for November 9th (happens to be Madés birthday and day after dad's birthday which is really shit)
  • Big surgery pencilled in for November 23rd but subject to change based on information gathered from scan, planning procedure etc. 

Meeting the liver surgeon next week because they are still deciding whether they operate on both my liver and colon in one marathon surgery, or do them separately.  I hoping for the all-in-one option to get it all done in one surgery. 

I should also warn folks that I've agreed to lend my story to media for the upcoming vote on the Assisted Dying legislation in New South Wales. This absolutely doesn't mean I'm giving up and I'm already planning my death. I just believe very strongly in what this legislation will mean for thousands of people who find themselves in horrific end of life situations and if I can lend my voice to that cause, for what's in worth, I think I should do it. FYI the Victorian legislation passed the 1st vote last night - 47 votes to 39. Fingers crossed for NSW in November but given our very Conservative government it's likely to be a much closer vote.