skipped my CT

I had a choice to make last Wednesday morning:

Get up at an ungodly early hour (unless you’re still out), have nothing to eat or drink (thus precluding the previous parenthetical), spend almost an hour on public transport (and then an hour back, unless something goes horribly wrong and you have to stay at the hospital – wouldn’t be the first time) to wait another hour in a room full of sick people (which could describe half the country right now), while drinking a liter of god knows what contrast solution… all just to get zapped with carcinogenic ionizing radiation over about 20 – 30 minutes in a tube (or longer – meaning twice, meaning up to six exams - if you or they screw it up – which also wouldn’t be the first time):

An abdominal CT delivers 2000 times more ionizing radiation than a dental X-ray. What’s wrong with that you ask? The New England Journal of Medicine says:

X-rays can also ionize DNA directly. Most radiation-induced damage is rapidly repaired by various systems within the cell, but DNA double-strand breaks are less easily repaired, and occasional misrepair can lead to induction of point mutations, chromosomal translocations, and gene fusions, all of which are linked to the induction of cancer.
  

They go on to say:

There was a significant increase in the overall risk of cancer in the subgroup of atomic-bomb survivors who received low doses of radiation, ranging from 5 to 150 mSv; the mean dose in this subgroup was about 40 mSv, which approximates the relevant organ dose from a typical CT study involving two or three scans in an adult.
  

So, I’ve been hit with countless atomic bombs already (including PET scans – which are worse and radiation therapy – which is much, much worse), when they were ostensibly necessary. What’s another gonna do to me? Or:

The chance to get paid €1000 to fly to Turkey for the weekend (-12º C vs. +22º C) with all expenses paid to act like a sleeping businessman in a Turkish Airlines commercial. Hmmm. Tough choice (or just look at the subject). So:
  

I got up at the ungodly hour of 6:30 AM, made some coffee (and hence my choice), opened the sealed hospital envelope looking for the number of the CT department. The report read: ‘Following complete remission…’ and was to involve three CT scans, but no phone number. I sent my oncologist an SMS and cancelled.
  

I went to the casting. I didn’t get it. Maybe it was my post-op passport picture of a skinhead with a black eye and stitches on his head - I have a lot of trouble with this and get to talk about my brain tumor at every border. Maybe my Turkish isn’t what it used to be. Maybe it was because I gave away all my ties when I thought I was dying and didn’t look much like a businessman. Maybe I just slouch too much when I pretend to be sleeping. Whatever the reason, it was still the right decision:
  

No one knows better than you how YOU feel. That’s why the doctor asks you, “How do you feel?’ or “Does this hurt?” etc. Just remember that. I feel better now than I have in over fifteen years and I’d like to keep it that way.

That said, diagnostic testing is important, but can be overdone and results misinterpreted (that story appears elsewhere). I neither want nor need another expensive (that I don’t even pay for) radioactive exam every six months, especially when so many (actually in need of them) don’t have access to this technology. Blood tests for cancer markers are simple, cheaper, less invasive, and not carcinogenic, but also not entirely accurate (depending on the type of cancer, its marker and individual physiology). Still, it seems to me a better interim alternative to ionizing radiation - and the possibility of new (unrelated) cancer.
  

My oncologist, bless her, called me Monday morning; she didn’t mind that I’d cancelled, she understood my reasons, and we rescheduled for the end of February. I think I can take it: as my radiation biologist says, “After radiotherapy, you could walk into a reactor without much added cancer risk.” She also hooked me up with an expat cancer survivor group. We’re to meet next Monday and I’m looking forward to it. I’ve got a lot to say.

“You have cancer.”

Words so terrible, you stop listening. In my case, I never got to hear them. I reviewed the MRI together with my neurologist in an empty hospital. She screamed and grabbed my arm. A really bad brain tumor looks like a really bad brain tumor. No medical degree necessary:

My cancer was obvious and it didn’t happen when I saw it, and yours didn’t start the day you were ‘diagnosed’. I’d had cancer for months (according to the doctors - actually years as far as I am certain), and so did you, when the doctor said those words. You don’t 'catch' cancer, you get caught with it. The dramatic (my own obvious tumor notwithstanding) ‘advancements’ - most of which are themselves highly carcinogenic - in diagnostic testing have far outpaced any progress toward better treatment, let alone cure.

Almost all of us have cancer of some sort at some time in our lives. My own (but I don’t think original) theory is that cancer is a function of the immune system that has simply run amok. Cancer develops as a result of stress, repeated injury and irritation, inflammation or infection. The fast-growing (and more prone to mutation) 'cancer' cells insulate the affected / infected area from the rest of the body until the immune system can launch a proper response. At which time, they happily kill themselves, congratulating themselves on a job well done.

[this aside from a radiation biologist, I’m in contact with who has studied cancer for over 20 years - sorry, but ‘people’ wanted references, or if you know how to use a search engine, which I’m assuming you do, you can find them yourself], ahem: "That is right. I would say even that everyone has many (maybe thousands of) dormant mutated cells capable of transformation. In addition, by advanced age, most people have several to dozens of small (2-3 mm) in situ (i.e. non-metastatic) benign tumors. The initial cancer event is always a mutation (or series of mutations) in a single cell (initiation). Then its development (promotion) depends on the tissue microenvironment, various protective systems and yes, immunity and inflammation. Infection (especially viral infections) can initiate cancer too."

If the immune system does not launch a response or is otherwise occupied, stressed or compromised or the various causes continue or are repeated, further mutations (DNA-damage) can occur in the ‘cancer’ cells, turning off the p53 gene for apoptosis – the cell suicide mechanism - when the mission’s accomplished:

If the immune system does not then take care of these cancerous cells itself, which it has a hard time recognizing, as they were previously on the same side, they not only continue to live, but multiply. That’s why cancer isn’t contagious: as it would be immediately recognized as foreign by a different immune system and promptly dispatched with. These endogenous rogue cells then develop, grow, divide and multiply (often very quickly) into enough Cancer (with the big C) to be revealed in an expensive test.

The words are terrible to hear, but they aren’t what gave you cancer. If the day you hear them changes your life, you’re ahead of the game, not behind. You realize what’s really important to you, who’s important to you; you become closer to yourself as well as to others. You reflect and gain clarity, when you’re not flipping out.

Cancer is an opportunity to make peace with yourself: to deal with your regrets and achievements objectively and with fresh perspective. It’s a chance to really appreciate the life you’ve had and the life you have left. You get to reprioritize and try to make sense of it all.

Excuse me, but I have a cat to feed:

...and if you have Cancer and found this post technically challenging or spiritually difficult, you've got a lot of work ahead of you. Take a deep breath and get started.

Synopsize ME™

Facing death (and giving it a bloody nose) is traumatic and life changing. People know that, they expect it. They expect you to be outwardly and obviously changed, to impart great wisdom from the beyond or be an insane, drooling vegetable. They expect you to win the Tour de France™ or spend the rest of your life in a home for those of similar incontinence. They expect you to be really nice or really bitter. They expect you to become a Buddhist or at least quit smoking. It’s human nature to expect a return on your emotional investment, some resolution or just plain punctuation. I did.

But facing death is actually pretty exhausting. The return on investment comes with time, rest and reflection, which I’ve tried to enjoy to the fullest this past year and change:

I started teamBEAT!!!™ with Jane and Damien in the very wake of Michael Jackson's embalming - a Soviet synth-pop revival band that toured Germany three times;

Launched two perfume lines for Avril Lavigne, aimed at the consumerist, brand-conscious, yet somehow 'rebellious teen' market... kids today;

Successfully embarrassed one of the richest men in the world (name withheld);

Crashed a honeymoon in Thailand to learn something I already knew about myself:

Starred in a Swedish Toyota commercial; 

Had the usual twelve-day festival, mikeFEST!!!™ - now in its 28^th year and with ever-better posters:

Got back and better than ever into shape after prolonged illness and atrophy.

And I watched as my two remaining tumors (17mm & 13mm), out of an original total of seven (after the brain baseball), shrank to just one that was ‘only marginally enlarged’ at 12mm (October 2009). That last lymph node is now (as of May this year) down to a normal 10mm with absolutely no sign of cancer.

And I’ve changed in very dramatic, but outwardly subtle ways that were never black and white and rarely apparent even to those who think they know me well. It is a life-changing experience, but it’s my life to change and figure out which babies to throw out with the bathwater. Real change takes time. I’m just happy that I have a lot more of it now.

three years

I went to see my oncologist yesterday for the second time this year for a wide smile, friendly chat and a checkup. Ironically, it was the third anniversary of when I started to lose it:

Three years ago yesterday, I’d been up for three nights straight putting together a photo exhibition (my first) in my courtyard and had stopped taking ibuprofen, taken to smoking cloves and wanting to be an artist, damn it. Here’s one of my favorites from the show:

Around two in the morning after my vernissage, I was at some club and started dropping beers. Things then went slowly from bad to worse until by Christmas, I was seeing double and could barely walk. The rest, as they say, is history: accessible from the archive to your right ->

Yesterday, my oncologist and I discussed her recent trip to Egypt, my summer and the book I was reading. She couldn’t stop smiling, as she’s not used to happy endings to stage IV melanoma with brain and lung metastasis. Being an oncologist must be the saddest job in the world. She was going to order a PET/CT for December, so I told her the following story from the last one in May:

me: Hey Doctor, it says here that one of these exams is equivalent to four years of ambient radiation. This is my eighth, that’s thirty-two years of radiation!

Radiologist: That’s right.

me: Isn’t that unhealthy?

Radiologist: Well, yes, but, let’s see… [looks at file] Wait a minute. You had radiation! That’s thousands of years of radiation!

Oh how we laughed. And so did my oncologist, but we negotiated down to an old-fashioned (less carcinogenic) CT instead, as she agreed that I needed more radiation like a hole in the head – which they also gave me. We left my next appointment until ‘sometime next spring’ and I asked her if she had many patients like me. “No, not like you,” she said and smiled anyway.

back in blog

Well, it’s been well over a year since I’ve posted anything. There were a lot of reasons why I stopped writing, but after more than a year and a half as a full-time cancer patient, mostly I just needed a vacation. I didn’t want to be ‘that guy’ anymore. I didn’t want people constantly asking me about my health, treating me differently or even deferently. Pity and praise, thoughts and prayers prefaced pleasantries and broke the ice, but not for me, not after a year and a half of it.

Cancer was a total mindfuck. I’d spent too long with too little choice over what I wanted, despite everyone doing what I wanted, which can actually be worse. So I declared myself cured (which I actually wasn’t – not completely like now), purposely burned the rest of my cancer cards and began to do what I wanted to do (which can also actually be worse).

I also felt that this blog had deteriorated into a bit of a travelogue, with little substance in terms of cancer advice and was hoping to correct that, but didn’t believe that I had the appropriate detachment, objectivity or even proof of my own cure to preach to others about a condition that I just happen to know a lot about from terrifying, first-hand experience. 

But I think I have that detachment now (or at least as much as I ever will) and survival guilt has seriously begun to ruin my party. People are dying while I rationalize and make excuses, and although I can’t possibly understand what each goes through in their own private hell, I do understand better than most and I think I can help. So instead of rambling on about my wacky misadventures, I feel I owe something to the memory of those that have died and to those just beginning the horrible waking nightmare that is cancer.

That said, I’ll write whatever I feel like, and if wacky misadventures can somehow inspire those who think that their life is over after being told that their life is over, then I’ve done some good - because it’s only just beginning.

the backstory intro...

First they thought it was pinched nerves, then “some hematological problem”, followed by “some tropical disease”, MS, a primary glioblastoma (baseball-size brain tumor) and now Stage IV metastatic malignant melanoma. This blog is the private, yet public, purely anecdotal evidence of my eventually successful 'battles' with cancer, bureaucracy, xenophobic finance people, as well as with my own personal demons. Enjoy!

cured?

There’s a nasty rumor floating around saying I’m cured of cancer. I know ‘cause I think I started it – and it’s even mostly sorta true. Read on.

I had the now far-too-familiar PET/CT scan the Monday before last just after Jon and Tommy arrived from Berlin to accompany me to the hospital where they could nap in upright comfort while I was injected (purposely) with radioactive glucose directly into my right hand (accidentally) bone (or whatever the technical term is for those bones in your hand) which spent the rest of the day as an arthritic useless claw:

I called my oncologist on Friday to get the results. “No cancer!” she said. I said, “What do you mean, ‘no cancer’?” She said, “No cancer! Come see me at the end of August.” I took that to mean no cancer. When picking up the radiology report yesterday though, I noticed it actually says, “We don’t find any masses of glucose hypermetabolization that would clearly indicate any neoplasm (tumor). Post-radiation fibrous changes in the left lung.” Or, in other words: no (detectable) cancer and sorry about the radiation.

But comparing the two scans, this and the one from March, there’s been little change – the two tumors in the lymph nodes remain the same: 13 and 17mm respectively, and the ‘mass in the lung is without obvious changes’. But none of the above appears to be viable or active in any way. Very good news, mind you, but pretty much the same (very good news) as last time, if you account for the wildly different writing styles of two wacky radiologists.

I also got my Czech visa finally registered last week – the end of a very long and tedious process. So that’s it! Got visa, European-wide health insurance and am cured of cancer. Thanks everybody! My exhibition was a blast and I had a great time with Jon and Tommy, when Jon wasn't yelling, that is:

I’ve spent the last week contemplating everything from my own navel to the universe, but mostly what the hell am I going to do now that I’ve got my health again, but no money. I guess I need to get a job of some sort. Any ideas would be most appreciated.

I’m escaping the craziness that is ‘museum night’ here in Prague in favor of a solstice party in Kolín, leaving in a few minutes. More soon and, as always, thank you for your support.