27 Jul 2011 Podcast 291 : Tumor Update – I’m Doing Great!
It’s been some seven weeks since I released my last Podcast episode. If you listened to the last few episodes, you’ll have heard that we found that I had a brain tumor. I released a couple of blog posts in the week or so before the surgery, but since the surgery I’ve been taking it easy under doctor’s orders, and gathering my strength for this comeback. If you don’t visit my blog or follow me on Twitter, Facebook or via the MBP Forum, you will have been without information for this last seven weeks, so today I thought I’d give you a full update on what’s been happening, starting with a step back to the first signs of the tumor earlier this year.
In mid-April, on the evening of the day that we reached Patagonia, after a few days at sea from the Falkland Islands in the last stage of my Antarctica Photography Expedition with David Burren, I started to have some funny turns. They started with a sensation in my nose, similar to how it feels after being punched in the nose. Not the associated pain, but the sensation, accompanied by an almost insinuated rather than actual smell. Then, moments later a strange tingling worked its way out from the nose and my chest down my arms and legs until my entire body was tingling. I became a little dizzy and sometimes nauseous, then after around 30 to 40 seconds it subsided, then stopped, with no apparent after effects. There was never any fear of me losing consciousness, and I could talk and move around while it was happening, but it was very disconcerting, especially as I didn’t have a clue what was happening.
The ships doctor couldn’t really pinpoint anything, but after a few days, the frequency dropped from roughly every thirty minutes or so, to once every few hours, then they stopped around the fourth day. Shortly after this, the voyage ended and I made my way back to Japan. After that the funny turns seemed to clear up, which was a big relief, while it lasted.
Then, on Sunday, June the 5th, the funny turns came back. I had one attack in the morning, and one in the afternoon. I was disappointed and again felt very concerned. On Monday, the next day, I had three attacks, and was getting more and more worried. I decided to confide in my good friend in Australia who’s not only an amazing photographer, but also a very good doctor, Graham Morgan. Graham advised me to get an MRI and start tests to find a possible problem with something affecting my central nervous system.
The Enemy Revealed
The following morning I went to a local hospital, that didn’t have an MRI, but did have a CT machine that would give us a quick look in my head. After explaining my symptoms and having the CT Scan, a smiling doctor exclaimed that there is something there, and with the next breath, told me with the same smile and a definite sense of excitement that it is a brain tumor.
We looked at the series of images from the CT scan, and you can certainly see something almost golf ball sized just left of the center of my brain. I used this image in my original blog post about the tumor because it’s easier to see something wrong in this image, but the main tumor is above the pituitary gland, so the bulk of it was behind my nose. The dark circle that we can see in the scan that I shared is a cyst that extended up from the nasal cavity which was pretty much full of tumor.
The doctors excitement actually helped to diffuse the situation a little, but I was still pretty shocked. I looked across at my wife who was in the room with me, and she looked like she’d seen a ghost, understandably. I reached out and took her hand.
We were referred to a larger hospital and went to see if we could start further tests straight away. They apparently don’t take outpatients in the afternoon, but we went anyway, and they agreed to start working with me straight away. We did another CT scan, this time while injecting me with a contrast medium that makes the pictures clearer, and they took six test tubes of blood for tests.
On the way to the CT scan room, the doctor said that I was surprisingly calm, and I was. Part of the reason for this was because I was stunned at what was happening to me. Another part was that I didn’t see much point in breaking down and feeling sorry for myself. All of a sudden I had a big job ahead of me, and I just wanted to get started on the planning and then the treatment. Of course, there were times initial when me and my wife were at home and the gravity of situation struck us, and we’d cry for a while and hug, but in general we remained very positive, and just pushed forward with our hospital visits as planned.
We went back for the MRI the following day, which was June 9, and at that point, made another appointment the following week on Wednesday the 15th, to discuss the results and start to build a blueprint of how we’d treat the tumor.
During this week there were times when it was difficult to know how to feel. On one hand there was the possibility that it could be all over, but on the other hand, there was, and still is, an enhanced appreciation for the time that we have. We had a really good blubbering session for example after I’d said that I want to look out across the Savanna with my wife once this is all over. I’ve always wanted to go to Africa, and really regretted not having realized this dream yet. The same goes for Iceland, and a few other places. The idea of the “Bucket List” was all of a sudden much, much closer to home that I ever imagined it would be at 44 years old.
I remember some five years or so ago, when I had my gallbladder removed, I spent a little time at the beginning of Podcast #29, to talk about how lucky I felt to have my health, despite the fact that the surgery would stop me from fully enjoying my photography for just a few weeks. Now though, I was faced with the possibility again, that this might all be torn away from me. I had no idea how high the risk was, but initially, I knew that there was at least a small chance, that I might not make it through this, and would not be able to live out the life that I’ve worked so hard to make for myself.
Last year, I realized my dream of becoming a Japanese citizen, and then leaving my day job, and starting my own photography business. I ended last year by achieving another goal which was holding an exhibition of my work here in Tokyo. This year I’ve gotten off to a great start, with a wonderful Snow Monkey and Hokkaido Photography Tour and Workshop, and followed that with an amazing Photography Expedition to Antarctica, the Falklands and Patagonia. My Portraiture and commercial work is also picking up, and plans for additional tours and other marketing activities are currently in full flow. I’ve never felt so confident that things are going to go really, really well, as I do right now, but, all of a sudden, that was all up in the air, until I could get rid of this tumor and get back to full health. I was confident that barring some totally unfortunate human error, I was going to get through this, and I really just wanted to get started, and get the pain that I’d certainly face from the surgery out of the way, and get to a point where I know I’m going to be alright.
What I’ve covered so far is an adaptation of the blog post I called “A Reminder of our Transience” in which I reported of my brain tumor. I’d dropped a bomb by mentioning the tumor in a conversation that I recorded with Ibarionex Perrelo, without any forewarning, partly because I only found out about the tumor the day before I was scheduled to chat with Ibarionex, and as you can imagine, it was very much ruling my thoughts at the time.
We went back to the hospital on June 15th as planned, to get the results of that test and my blood tests etc. From the results of the tests, we now had a name for the tumor. What I had is called a Prolactinoma, otherwise known as a Pituitary Macro Adenoma.
Prolactin is the hormone that stimulates the production of mother’s milk. Normally this would be around 13, but my prolactin was in the 16,000s, basically meaning if I had the parts to do create it, I’d have been making a couple of pints of milk a day! 🙂
The good news was that this kind of tumor is pretty much always benign, so I was happy to probably be spared from having to go through cancer treatment. The bad news was that my prolactinoma was big and had wrapped itself around the two large veins behind the nose and around my optical nerves. It had also eaten into the slanted bone behind my nose, which was all going to make it pretty complicated to remove.
I already knew that this thing was messing with my eyes, because on June 11, my eyesight went to pot again. I recognized this as the same sort of thing that happened while I was shooting in Hokkaido before my workshop in February this year. At that time, I thought that part of the cause was that a part inside the viewfinder of my Canon EOS 1D Mark IV had come loose, and that still could have been part of the cause, but after returning from Hokkaido I was diagnosed as having Presbyopia, as well as a loose part in my 1D Mark IV viewfinder. Canon fixed my viewfinder for me, and the optician did his thing on my eyes by creating me some snazzy new vari-ofocals, that were a right royal pain in the @ss to get used to, but I did get used to them after a couple of days in Buenos Aires on my way down to Antarctica.
Despite the problems with my eyesight, things seemed to be progressing, and we were waiting for a date to go in for surgery, when things took a little turn for the worse health wise, but that rocketed me forward as far as getting my surgery scheduled was concerned. It scared the hell out of me too.
At about 9:30 on the evening of Wednesday the 15th of June, the day we’d been to receive the results of my tests, I had what for all intent and purposes seems to have been a cerebral infarction, or a stroke. First my left arm went all tingly, then I couldn’t type with it. When I tried to tell my wife Yoshiko that something was wrong, my speech was all slurred, then as we called an ambulance, my left eye went as dark as night. It really did scare the crap out of me.
Luckily though, even as I lay in the ambulance, the numbness in my left arm and leg started to subside, to the point that I was able to grab a few shots of the inside of the ambulance. My dark left eye cleared up shortly after that too.
I’d say I’m lucky as hell, as this attack, so different from all the earlier funny turns, didn’t seem to leave me with any lasting paralysis. Phew!
The other lucky turn that came out of this was that was bumped up from a regular day patient, to a semi-emergency patient. I was admitted to hospital right there and then on the 15th, in case anything else cropped up, and the following day the surgery to remove the brain tumor was scheduled for Friday the 24th of June. With my personality and somewhat impatient tendencies, this was good news.
This takes us up to the end of the second update that I released via my blog. I have to tell you again that I was totally blown away by the response to this and my first post in which I told everyone about my brain tumor. The online Photography community is the best there is. You are all awesome human beings, and I treasure each word that you all took the time to leave against these posts. Thank you all so very much indeed.
So, from here on, this is all updates from after the two blog posts that I managed to put out.
I remained in the Daisan Jikei hospital, first hospital that I was taken to on the 15th, until Saturday the 18th, when I was moved to the main Jikei hospital in Shinbashi, Tokyo. Actually, as I was now pretty stable, I was just asked to get a taxi over to the main Jikei hospital myself. It was nice to get outside, even though I did see it from the back seat of the taxi.
The next six days were basically just a relaxing time, waiting for my surgery on the 24th. My eyesight did not return during this time, as it did in after I came back from Hokkaido in February. I was on a drip with medication to stop my brain from swelling to control the pressure in my head, and I needed to be in hospital in case there was a repeat of that stroke type thing that happened on the 15th, so I wasn’t at all concerned about spending this extra time in the hospital.
I was blessed with visits from lots of my friends here in Tokyo, including these four dudes that I was proud to work with in my old job, that I left in September 2010 to set up my own business and pursue photography full time.
It wasn’t until I got home and saw some of the pictures of myself at this time that I understood why my visitors looked so concerned when they came. My right eye had drooped so much that it was almost closed, as you can see below, and apparently my voice was a little slurred and slow as I spoke too. I really did need to be in the hospital. Much more than I realized myself.
Sean & Zena in Town
I was also so grateful that my brother Sean and his wife Zena were able to get three weeks off from their busy jobs to come and be with me and Yoshiko during this difficult time. They arrived on Wednesday the 22nd of June, and would be here until July the 12th. Here’s me and my bruvver on my hospital bed on the 22nd, the day that they arrived. They were at the hospital with my wife Yoshiko from early every morning, having traveled across Tokyo in the rush hour, and stayed until the evening, every single day. Even just being in the room together made me very happy, as I am very close to my brother and his wife, but every so often we’d laugh so hard my stomach hurt. This is pretty common when my brother is around.
One day, Jouki-sensei, the neurosurgeon that would remove my tumor came to our room and started telling us some statistics about people that get prolactinomas. One he said was that although no one knows why, most people that get these tumors are very intelligent people. I of course lapped this up, but then told Jouki-sensei that my brother is much more intelligent than I am. Sean retorted with a heated argument that I was the more intelligent of the two of us, an added that I’m one of the most intelligent people he knows. Of course, I’m not. I’m just his little brother and he thinks a lot of me, as I do him.
The neurosurgeon was smiling throughout the conversation, and agreed that he believed I was a very intelligent person before leaving a few minutes later. Sean then turned to me and said that he can’t believe we’ve just had a conversation with a “brain surgeon”, which is up there with “rocket scientist” about how intelligent WE are!! We laughed so hard I was crying, with laughter of course.
The Big Day
Gradually the big day approached, and before I knew it, I was being wheeled towards the operating theater, and told my family not to worry about me as we passed the point where they could no longer follow. As soon as I came to rest in the operating theater the anesthetist did his thing and as I started to fade into what would be a five and a half hour sleep, another doctor started to press something like Velcro tape into my forehead. It was obviously covered in tiny needles as it was literally sticking into my skin, and in my last few seconds of consciousness I heard him tell me that it was to attach the computerized surgery navigation robot to my head.
The next thing I knew, the anesthetist was there as I woke up, and immediately pulled the tube that had been feeding me oxygen out of my mouth. I’d told them that when I came around after my gallbladder operation no-one had noticed and I was gagging with the tubes in my throat for quite some time before someone noticed me struggling and pulled it out. They ensured that they’d watched over me very closely and the tubes were in literally about a second after I came around. Thank for that guys!
Wiggling Fingers and Toes!
The next thing I did was wiggled my fingers and toes. I had been scared that someone might cut something in there that paralyzed me, and all the time I’d thought about waking up after the surgery I’d thought to myself that I must do this as soon as I can. I was literally kicking my legs around in joy when Jouki-sensei, the neurosurgeon came over and looked down into my eyes. I cried as I thanked him for doing a good job, and then asked him how long the surgery had taken. It had been five and a half hours, about an hour quicker than they’d expected.
He didn’t look as happy as I was though, and soon told me that I’d bled a lot, and although they tried to remove the cyst that had pushed up into the left side of my brain, they couldn’t burst it to pull it down. Apparently it was just too hard, and if I had bled any more they would have to have given me a blood transfusion. I’d given them permission to do so if necessary, but he wanted to avoid it, as I had been bleeding abnormally. They apparently spent a lot of time during the surgery just stopping bleeding before they could proceed with the procedure. He was very apologetic that he could not remove the cyst, but repeated that it was just too risky, and impressed on me that the remaining cyst and bits of tumor around my optical never etc. could be removed with medication in the coming months.
Shortly after I was moved to the Intensive Care Unit, where I’d spend the night so that I could be monitored closely. I was whacked out on morphine or something the evening of the operation, so the whole thing was a bit of a blur, but it felt like a very drunken afternoon far from home — not entirely a bad experience, but with an underlying sense of uncertainty. There was lots of joking and messing around with Yoshiko, and Sean and Zena, and there was also two friends from my college days in Sendai that came into town to be there when I came round. It was great to be surrounded by people I love, and honestly, I would never have thought one could laugh as much as this straight after brain surgery!
Of course, the reality was that I’d had a huge operation and was in pretty bad shape. My right eye had closed totally, as you can see in this photo, and I was full of wires and an oxygen mask, but we had such a good time. As the medication wore off though the night was tougher. I managed to get some rest, although there was a poor guy in the next unit that had come to Tokyo from Osaka and passed out, waking to find himself in hospital having had surgery that had left him in a lot of pain, and very confused. This guy was struggling and fitting all night, which did make it more difficult to get any real rest, but I felt sorry for the guy. He seemed in a really bad way.
Yoshiko came back in to see me early the following morning. Officially visiting in the ICU is from 11AM, but she slept in my hospital bed while I was in the ICU and so was there anyway. After a little negotiation, the nurse let her in for 30 minutes around 8AM, which was great. It had turned out to be quite a long night and I was very pleased to see her.
I was moved back to my room after another CT at around 11AM, and the neurosurgeon was pleased to see that the cyst had already shrunk a little following the surgery. The following three days were a bit rough. There wasn’t much pain as such. I was most uncomfortable because there were four strips of gauze in each nasal cavity, to prevent bleeding. This meant that there was a vacuum created that caused the back of my nose and my ears to squelch every time I swallowed. When they pulled out the four strips of gauze from behind my nose and below my eyes, things got a whole lot easier almost instantly. Really, I felt 300% better in the space of a few minutes, but pulling these things out hurt like hell. Scroll down at your own risk, but here’s a blurred iPhone photo of the total of eight strips of gauze.
I continued to get a lot better very quickly over the following days. A few of the guys from my old office came by again, and it was great to see them. They were surprised at how well I looked, as they’d expected I’d have a shaved head and stitches. I’d forgotten to mention until now, but this was because the surgery had all been performed through my nose. I said earlier that there wasn’t much physical pain, but one thing that did hurt was my nose. I broke my nose pretty badly in my teens, and this had resulted in the bone behind my left nostril that should be straight, was bent like a W shape when you looked at it from above in the MRI. It was like a piece of corrugated steel, and would have prevented the surgeons from getting in and doing their stuff. So the first thing that they had to do, was break this bone and straighten it up. This meant that for the first four or five days after the surgery, if I touched my nose, even very lightly, it hurt, much like it did when I broke it back in my teens.
The surgery was done, through my nose, means that the surgeons worked in a team. I named my team the “Dream Team”, and it consists of Dr. Jouki, the neurosurgeon, and Dr. Matsuwaki and Dr. Mori, the Ear, Nose and Throat doctors. These are three unbelievable human beings to whom I owe so much. If you ever take a look at this guys, you’re the best! THANK YOU!!
One nice and very unexpected side effect of having this bone straightened up is that so far, since leaving hospital, I no longer snore. My wife has been sleeping with earplugs in for the last five years or so, bless her, but no longer needs them. Thank you Matsuwaki-sensei for this too!
I was discharged from hospital on the 1st of July, eight days after the operation.I was a little wobbly on my feet, having spend over two weeks in bed in total, but I was feeling great. Jouki-sensei had told me that I was OK to drink, and surprised me when I asked how much, with the replay, “as long as you don’t throw up, as much as you like”! Wow! I was OK to drink! We celebrated my release with a couple of small cans of beer, but following what I’d been through, I didn’t push my luck. This was the only beer I had, and intended to have for a while.
A Turn for the Worst
Unfortunately, about four days after I was discharged from hospital I started to feel a little under the weather. At first, we put it down to my low hemoglobin count, due to the amount of blood I’d lost, but I got more and more poorly until I could hardly stand on the sixth day after I was discharged. We called the first hospital that I’d been in before the surgery, as they are only about 10 minutes from our apartment, and quick tests after I got there revealed that I had a sever liver malfunction, just a smidgeon before acute hepatitis which could have killed me. It would have been ironic to make it through brain surgery only to pop my clogs from liver problems.
Sean and Zena were due to leave Japan on the morning of the 2nd of July, so I kind of half discharged myself on the 1st so that I could be home with them on their last night in Japan before returning to the UK. The doctors agreed for me to leave of course, but they weren’t totally happy. In fact, the doctor that I saw when I went back for a blood test the following Friday to make sure I was improving, through a wobbly at me when he looked at my blood test results because they were no better than when I’d left the hospital on the Monday. He was giving me a dressing down for leaving the hospital too early, and telling me that they force me back into the hospital so that I would rest if my blood tests didn’t improve next time. I told him that I had taken it very easy, at least as easily as I did while in hospital but with the exception that I could sleep at night when at home. Then, after I asked him to check the latest blood test numbers compared to the other older tests that I’d had, he apologized and told me that he’d been comparing the wrong set of numbers. He was comparing the numbers on the day I was readmitted to hospital with the ones from a blood test just a day or two later. He wasn’t looking at the results from the blood test I’d just had, and when he did, he announced that I was much better, and apologized again.
I went back for another blood test on the 22nd of July, and once again, my numbers were much better. Almost back to normal in fact. The bad news on this day though, was that the results of a special test that they’d had done, where they introduce some of the medication I’d been taking into some blood samples showed that the liver problem had been caused by an allergic reaction to the two most important medications that I’d been prescribed. Well, actually it was really just one medication, called Cabaser, which was to reduce my tumor in the months after the surgery. Without this medicine, the cyst and remaining tumor would stay in my head. The second medication I was allergic to is Tegretol, which is to stop the attacks I’d been having. These though had stopped after a few that followed the surgery, and although I had 10 of these attacks on the 7th, when I was readmitted with the liver problem, they stopped dead on the 8th, following me being taken off the Tegretol, which was supposed to stop them.
As of the time of writing this blog post on July 18th, I have not had a single attack since the 7th, so my neurosurgeon did not try to find a substitute for Tegretol. It seems the attacks have stopped without any medication, so I no longer need it, especially as you consider that the main part of the tumor that was causing these attacks has now been removed.
New Medication, New Start
I do need something to reduce and eventually remove the remnants of the tumor though, so on July 26, following one last check to make sure my liver can take it, I started taking Teruron, which is a slightly older but still effective medication for this job. Unlike the Cabaser which I was to take just once a week, I have to take the Teruron every evening after dinner. It made me feel a bit dizzy at first, so I’m hoping I get used to this, but really, I don’t think I have any other options. I’ve got another blood test planned on August 1st, to ensure that I’m not having another allergic reaction, and I’ll have another a couple of weeks later, but I’m really hoping that I can take this medication.
I’ve been under orders to continue to take it very easy, especially following the liver problems, and for this first month after the brain surgery, there wasn’t really much choice. I had very short spurts of energy, and at first could only sit at my computer for 15 to 30 minutes at a time max. Then I’d get really tired and have to relax again for a number of hours. As the days passed by though, I’ve found myself with more and more energy, and was able to go to the main Jikei hospital and back by train last Saturday. I also walked from the train station to the 3rd Jikei hospital on Monday, which is a reasonable walk of around 20 minutes each way, so I’m definitely on the mend.
Oh, and I almost forgot to tell you that I also got the results of the tissue tests on the tumor last Saturday, and was very relieved to hear that the tumor was benign, as the evidence had pointed too. I was pretty sure this was the case, as the results will have been back shortly after I was discharged on the 1st of July, and I’m pretty sure they’d have called me in if the results had gone the other way, but still this was a big relief.
Back to Photography Soon!
I’ve been given the go ahead from my neurosurgeon to start taking longer walks and go out doing more and more as my energy levels allow. I’ve wrote most of this blog post in one sitting on July 26, and completed it and then recorded the accompanying Podcast episode on the 27th. I couldn’t have done this until now, but hopefully, barring any more complication, this should mark my return, and hopefully I’ll be here every week now, for the foreseeable future.
The next big goal of course is getting out with a camera and a few lenses. With the Japanese summer that usually keeps me indoors anyway in full swing, I don’t see me going out for any length of time just yet, but before too long, it will be really nice to do some more photography. I also have a couple of portrait jobs lined up with people kindly waiting for me to get better, so I’m looking forward to booking these sessions by Autumn too.
I’m expecting that when I do get back to photography, the way I see the world will have changed somehow. Following these experiences, I feel as though as have a new appreciation for the world around me. I have been through hardships in the past, and always felt as though I was lucky to see the world a little differently from people who might have led a more trouble free life, but this is the closest I’ve been to saying goodbye to this wonderful world we live in than ever before, and I’m still not 100% out of the woods, but I feel as though I’m seeing more than I ever have before. Actually, this is true in the physical sense as well as spiritual sense.
My drooping right eye righted itself in about four days after the surgery. My double vision and off axis vision got better shortly after this too. As I sat in the taxi on the way home on July 1st though, having put my glasses on for the first time in over a week, I realized that I couldn’t see very well at all. I took my glasses off, and looked to see how far I could see without them, and was amazed to be able to see car number plates way off in the distance.
Eyesight Best in 25 Years!
My eyesight is now almost perfect, even without my glasses. This could still change, so I’m trying not to get too excited about this, but really, I can see details on trees and building on the horizon, and I’ve not been able to see like this since I was 19 years old. Until I was sold them relatively strong vari-focal lenses in March, following the problems I had in Hokkaido, I wore glasses with very mild prescription lenses since I was 19, but even if I try my old lenses, I can’t see with them. When I look around with both eyes, my eyesight seems perfect. If I look with just my right eye, it’s still perfect, but when I look with just my left eye, it’s slightly blurred. Maybe a little better than it was after my eyesight changed when I was 19. I’m going to give my eyesight another month or so to settle down, but if it stays good like this, I’ll go and get an eye test to see just how good it really is, and also to see if I really don’t need my glasses anymore, despite the slightly weaker left eye.
This, like the snoring going away were totally unexpected but very nice bonuses following this ordeal. I feel very fortunate to have come through this alive, but to have these additional gifts given to me, makes me feel even more humbled and fortunate.
This will hopefully be the first and last Podcast episode in which I go to length about this experience, but I will keep you up to date on my progress as we try to get rid of the cyst and tumor remnants still in my head.
I know that some of you will have no interest in all of this, and if that’s the case, I’m sorry for going on about this. I also know though, from some of the amazing comments I’ve received over this last six weeks or so, that my sharing this experience has helped some people, and I imagine that some people will end up here after a Google search for some of the medical terms I’ve used. It’s my hope in sharing theses experiences that I’ll be able to help others in a similar position in some way. If you are one of those people, be strong. You’ll get through it, and you’ll be stronger for the experience.
Once again, I wanted to extend a huge thank you to each and every one of you that took the time to give me your support and prayers through the comments on the blog, Twitter and Facebook, as well as directly by mail. I will truly treasure every word of concern and support that I’ve received during this trying time, and hope that I will be well enough to visit some of your countries in the near future to shake your hands and thank you in person for your amazing kindness. Thank you!
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