The results are reported by three different radiologists, so the final report is still pending, but the preliminary report is as follows.

There appears to be no further spread of my cancer than what we already know about from CT imaging. Basically, this is what we were hoping for. There was a real risk of having further metastasis that are too small to be seen by CT, if you were to follow the expectant course of adenocarcinoma, then you might expect to see these. I was thinking we would see further lymph node involvement at the very least, especially in the para-aortic chain where there is already disease. But, it would seem there are only the four nodes that we already knew about.

What this means is that I am being offered surgery. I described these surgery in a previous post, so won’t get into the finer details of it here, but retro-peritoneal lymph node dissection is pretty huge surgery, and not without its risks or complications. What surgery offers though, is the first prospect of turning my illness into something non-terminal for over two years. Its a bit to get my head around to be honest. Of course, surgery could equally accelerate the disease and having me find my end of life sooner rather than later, as with medicine in general, its a risk/benefit equation.

At this stage, surgery has been pencilled in for the 14th of February. I would expect to not be working for probably 3 months after that as I recover. The hospital stay is 10-14 days if there are no complications making me stay longer, but with a surgery this large, there is a reasonable chance that complications will occur. In the mean time, I may or may not re-start chemo, I have to wait till I meet with my oncologist to see what he thinks with regard to this.

If the final report adds or changes the picture, I shall update to let you all know. In the mean time, I will digest this new and rapidly changing course of events.

Into the unpredictable future I go…

Earlier this week, on the 2nd of January, Kristian Anderson lost his battle with bowel cancer.

He and I first made contact a couple of years back shortly after his diagnosis. We are of a similar age, and have a similar life philosophy, and battle the same sinister illness. He was slightly more advanced than I was at his diagnosis. Whilst we both have our struggles with our illnesses, perhaps his was made a little more poignant in that he has two young children, all the more motivation to beat cancer, and survive.

I too relate to this drive for survival. The motivation to live is not for my own benefit, but for that of my wife and my family and friends. If I was to have children, I can only just imagine how much harder that would be.

Kristian shot to fame shortly after his diagnosis when he produced a video for his wife for her birthday. He managed to get Hugh Jackman and PM John Key in on it, and it went viral online.

After his rise into the media consciousness, Oprah interviewed him on her show when she toured Australia last year.

Throughout Kristian’s Journey, he and I have shared the highs and lows of bowel cancer. The tough times, and the joyous times. It is with a bittersweet note that he has passed away. Bitter, because it should never have happened, because he leaves behind a wife and two children, and because his life was stolen from him. Sweet, because he gets to be with his Lord, and the at times very difficult journey, has finally come to an end, the suffering has stopped.

Kristian, you were a friend whom I met through circumstance and suffering. You were a man of faith who has got to meet his maker. Our heart goes to your family, Rachel and your children will be in our prayers for many years to come.

May you rest in peace, with the Creator of the universe whom you adored so much.

I recently upgraded my canon 500D to a 7D, which is a really really nice camera. Theoretically it should take better photos that my previous one, but I guess it depends on who’s holding the camera . I have sold my current camera to my sister, so she is starting to pick up the hobby.

The rain in Auckland has been miserable lately, so I haven’t had a good chance to get out and take some photos, apart from a rainy day flower, and experimenting with light and kiwifruit.

Enjoy…

Shutter 1/60, f/4, ISO400, 55mm

Shutter 1/250, f/10, ISO100, 116mm.

I had a CT scan about 4 weeks ago which I have not reported back about, but it basically showed no change, except for the possibility of 1mm of growth in the largest node, but well within the margin of error. This scan has got people talking.

My oncologist, 3 weeks ago made a few comments. Basically, my cancer is not behaving as cancer should. Statistically, I have less than 20% chance of being alive in a years time, but that same statistic was true for me a year ago, and probably true for me a year before that. This cancer does not behave as conventional wisdom predicts it would. The conclusion, after 2 years of very little and very slow growth, in the context of no family history and my unusual presentation, has made oncologists begin to believe that they are dealing with a very different beast than they are used to dealing with. Cancer is a term that encompasses a very broad selection of illnesses, and whilst it follows trends, accumulates similar mutations and characteristics, each cancer is generally genetically unique to that person, and unique to the body habitus it finds itself in. Mine is clearly declaring itself to be on the more unusual end of the spectrum of illness. Forty one rounds of chemo and its tolerance, age, and my unusual response/progression, without organ metastasis (that we know of),  are all testament to this.

Given this conclusion, people started to think that if this is an atypical presentation of adenocarcinoma, then perhaps it requires an atypical response. Conversations behind the scenes began to happen across multiple teams of multiple specialities. Then, two weeks ago, I was given an offer, which began to set things in motion.

The offer involves surgery. Retro-peritoneal lymph node dissection to be precise. The conversations were had with the urologists who are experts at this kind of surgery, since it is where testicular cancer spreads, and they perform it routinely for germ cell tumors. They were interested. The surgery is technically difficult. I have nodes behind my left renal vein (there is a possibility i could lose a kidney, but unlikely), one sandwiched between my aorta and inferior vena cava (IVC), and another one that is retro-crural, that is, behind the diaphragm where the aorta crosses. This surgery will require input from the urologists and the colorectal surgeons for their respective skills, as well as input from one of the countries leading experts in liver surgery, in order to access the retro-crural node behind the liver/diaphragm. There will also be input from the vascular surgeons as the removal of the node between the aorta and the IVC may in fact require removal of the IVC and the aorta themselves with replacement grafts sewn in.

In short, it is MAJOR surgery, with a number of potential complications that include the usual suspects of bleeding and infection, but with the addition of possible lymph fluid leak (which will delay recovery somewhat) and spinal cord infarction (this means paralysis). The latter of which is fairly rare, but present (1 in 10,000). Recovery is generally in the order of 2-3 months.

This surgery offers me three potential outcomes. The first being that the cancer relapses fast and aggressively (which is what it typically does and why surgery has not been offered up to this point). This means I die from cancer, but sooner than I might have, so in my mind, this is no different to the current situation I find my self in, just a quicker version of it. The second possible outcome is we achieve medium term remission of no cancer progression for 5-10 years, the cancer then returns, and the same ultimate outcome happens but at a much delayed time frame. Finally, the third possible outcome is long term remission, where the cancer does not return and I live for 50 years, only to die from being hit by a bus, or from a new cancer from the ridiculous number of CT scans I have had over the past 3 years. It is impossible to know what the likelihood of each outcome is, but it is reasonable to aim for medium term remission, hope for long term remission, and plan for fast relapse. To think of this surgery as cure would be inaccurate, and probably foolish, but its nice to have an option on the table that is different from my current one.

So, the next step is to get a CT PET scan, which will happen in early January, and will determine more accurately the degree of spread of the cancer in my body. If it turns out there are microscopic metastasis throughout the body, then the surgery will be a no go, if not, then I will be offered it. If the surgery goes ahead, then it’s likely to happen end of January, or beginning of February.

In the mean time, so that there are no false negatives on the CT PET scan, I have no chemo until January. Perhaps the record has been set at 41 rounds, and I shall not be extending it further, only time will tell.

Until next time….

This recent round saw me over the toilet bowl vomiting as soon as my 5-fluoro-uracil push was given at the hospital. Not so flash. It was amazing the relief I had from nausea though after the vomit. There were a couple of further episodes over the weekend, and an extra day off work on Wednesday as I hadn’t quite recovered to full function as usual.

Now that it has all left my system, I am back to my usual in-between-rounds self, with round 42 next on the agenda, and a break for Christmas.

Until next time…

Two years of chemotherapy have passed, three years of cancer. It was even three years yesterday that I had the encounter with the scalpel that arguably saved my life, yet at the same time revealed its fragility. Three years since my hemicolectomy.

Three years of life where I emulsify the bitterness of chemotherapy with the joy of living. An unlikely duo of flavour who’s individual components enrich the other. It is through my joy that the suffering, the chemo, becomes all the more burdensome, yet it is through the suffering that even the mundane becomes joyful. For how can we know what black is unless we compare it to white, or white without comparing it to black, lest we mistake either for a shade of grey.

This round passed as previous have, and thankfully more tolerable than number thirty nine. Another notch in the wall, set apart only in that it precedes the forty first. In all other aspects it remains to be an undesirable experience.

Till next time….

… yet my life is measured in such increments.

This most previous round was a lot rougher than some of the earlier ones. No rhyme, no reason, but the nausea more apparent, the fatigue more palpable, and the ongoing abdominal pain that almost sent me to the ED on Sunday night. Its such a fine line when one wonders whether or not I should be going to the hospital for symptoms. Do I walk the road of the hypochondriac, or the stoic patient who foolishly refuses treatment. Its not as clear cut as it should be, even when I’m a doctor. At least when I’m treating patients and making decisions I have empirical evidence to guide my judgement, blood tests, radiology results, the clinical exam. All apart from the latter I lack at home. Fortunately a chemical cocktail of non-steroidal anti-inflammatories, paracetmol, and sedatives allowed sleep to beat the pain… and in the morning, relief.

I’m not entirely sure what caused it, but it was transient, and it resolved (mostly), which is good enough for me to ignore it for now. I shall address it should I encounter it again.

Two more weeks until I make the 40th round mark. I wish I got something to celebrate with rather than the nausea and misery I usually get. I guess I’m grateful that I get a bit more life to live from it, that in itself is reward enough… Although life itself is not very useful unless you do something meaningful with it. There are 7 billion people in the world now living their own unique life, I wonder how many of them make it a meaningful one….

Till next time..

Shutter 1.3s; f/25; ISO 100; 250mm

]]> http://jarednoel.wordpress.com/2011/10/24/pausing-for-a-photo-and-other-rwc2011-images/feed/ 0 Jared On the Way to the Game… Pausing for a Photo. _MG_0035 _MG_0059 _MG_0043 http://jarednoel.wordpress.com/2011/10/12/hope/ http://jarednoel.wordpress.com/2011/10/12/hope/#comments Tue, 11 Oct 2011 17:40:00 +0000 Jared http://jarednoel.wordpress.com/?p=2836 ]]> Did you know that based on population data, I only have a 20% chance of being alive this time next year?

The odds are long, but then they always have been, and so far, I sit way out on the bell shaped curve, probably 2-3 standard deviations out, in terms of my survival. But when you are confronted with a statistic like that, how should we respond?

Do we give up hope, wait for the inevitable?

Do we plan for the inevitable and go sit on a beach somewhere?

Or do we just ignore that statistic and pretend it doesn’t exist?

Many people try to sell me hope on this journey, and the sales pitch comes in many forms which can probably be put into two broad categories. First, is the alternative medicine category; “I have the cure for you”; “you should try this diet”; “I know someone in India who can cure you” characterizes this response. This versions of hope is sold to me on the premise that there is an undiscovered cure for cancer that people know about, but the medical establishment has turned a blind eye to. The second category is more a faith based one. It is often characterized by comments like “Claim the healing and God will heal you”; “if you have faith, God will heal you”; and sometimes, just as “God will heal you”.

“I think hope is sometimes a wolf dressed in sheep’s clothing. We live in hope for one thing because the reality of the alternative scares us too much. In actual fact we are living in fear… or denial.”

This was a Facebook status I mused upon recently and the premise for the third response. What I have discovered is that there are in fact two types of hope. The first of which is characterized by the kind of blind faith that is often sold in the above formats, be that a faith in alternative treatments or a faith in God. This kind of hope has grandiose promises of a life free of suffering. These promises seem to offer a freedom from the life we may think we are stuck with, and a future fantasy that often really only serves as a form of escapism. At the heart of this kind of hope though, is the fear of our reality. Its a belief in the possible because the probable is too hard.

Its thinking we live in hope, but actually living in fear…

It’s a form of denial…

Which is why very often this kind of hope will collapse in the face of suffering, cause disillusionment, and become its antithesis, hopelessness.

This begs the question, what IS hope?

For me, hope is found by acknowledging my reality. It’s embracing the fact that I only have a 20% likelihood of being alive in a year, and knowing that my future will have suffering. It is taking my fears, my anxiety, and the life I find myself in and giving it over to something greater. When I submit my fears, I relinquish the control I try to have over them and I am stripped back to the absolute core of who I am.  In the process of that submission hope is birthed…

Acknowledging, and then submitting my reality to God, is the only place I have found hope. Hope that energizes me, hope that motivates me, and hope that what I do in this life, is working towards something far greater than I could ever imagine.

It is by knowing my reality, rather than ignoring it, that the seed of hope grows…

And true hope has powers far greater than fear…. It even conquers death.

I am at peace with my diagnosis and prognosis, yet I have hope. The hope is not necessarily in a cure, or in healing, it’s an intangible hope that permeates everything I touch and every day that I am alive. It’s a hope that is beyond the natural, that is Christ fueled, and allows me to live the life I was meant to, even if it wasn’t the life I had planned.

When hope is born from suffering rather than fear, that is when it becomes real.

Thanks for listening.