|Many of you have read the story of the untimely demise of a very sensitive body part of mine (Time to drop the Ball).
Unfortunately, the story doesn't end there. Even after my operation, I wasn't feeling as well as I should have. I lost about 15 pounds and only about half of that can be attributed to my missing jewel.
The biopsy report came back wrapped in a big hushed "C".
Yes my friends, like in cancer with a capital C. So I decided to join the latest craze and create my own: "Cancer Diaries" I will write about my personal experience with the only thing that scares people more than George Bush' propaganda.
First of all, let me tell you that the cancer I have although it is in advance stage is not extremely life threatening. I have a seminoma also know as testicular cancer. It has already spread into my lymphatic system and possibly into the fat surrounding one of my kidneys. As bad as it sounds, a good dose of chemotherapy should take care of the whole thing and in about 3 months I should be ready to have a ball (as in party, not a replacement for my missing one).
Some people reacted a little shocked about how I wrote about the amputation of my nut. It seems that many people feel that there is a boundary that humor is not supposed to overstep. I personally feel humor has to have space in every part of our lives. Actually, the more serious it is the more humor it needs. I think we should be able to make fun about anything.
Here is something I wrote a while ago:
You can't make jokes about Jews unless you are Jewish.
You can't call someone a nigger unless you are black yourself.
If you are on the other hand a one-eyed, black, Jewish gay guy who lost a relative in 9/11, you can make jokes about anything you please.
Back to the actual diary part of this.
I am feeling OK, mentally and physically. At no point in time did I feel distressed. It never occurred to me that I could possible die of this thing. And up to this point, I still believe that an hour in Manila traffic is probably twice as dangerous as that funky stuff growing in me where it shouldn't.
The only worry I do have is my financial situation.
I was broke to begin with and now I am even broker. The whole fun has and will cost me about US $ 6,000 and a few months of minimized income. Luckily my Mom and some of my wonderful friends helped me out so far. But they can only lend me the money and I still have additional living expenses. So please buy some of my artworks, hire me as a photographer or make use of my great design studio.
Going back to my friends. I have been overwhelmed with emotion about how many of my friends came to me and offered their help.
That alone was as good a therapy for me worth two months of chemotherapy.
I will not write every day and I wont bother you with routine. Just the interesting and funny stuff. If you have any questions please ask.
Day 1 of Chemo
For mental health reasons I chose a nicer hospital for the chemotherapy. I figured if I am not feeling very well I don't want to sit with another 20 very sick people in one of the dirty hallways that are so typical for hospitals in the Philippines. The one I am in right now looks like a real hospital, clean, bright and sterile. The main difference to a hospital in Germany for example are the nurses. They are really cute here especially the girls.
There is an area which has 8 Lazyboys arranged around a couple of TVs and it looks really cozy. When I arrived there for the first time I was all alone and I sat down on one of them and thought to myself that the chemo would be half as bad in this kind of surroundings. A few moments later two large Filipino families arrived and distributed themselves all around the remaining Lazyboys. The two TVs which were standing right next to each other were switched to daytime TV shows and the volume was turned up. That alone would have been bad enough to give you cancer but let's not forget, Filipinos are good in multi tasking. They choose to watch two different daytime TV shows at the same time.
My wife came and rescued me. Apparently there was the option to lay down in a private room. From there on it was easy street. I received a series of infusions over a period of 3 hours an I experienced no side effects.
Nothing remarkable happened on day two except that I felt very good. No more pain and mentally alert. I am about to go to day 3 and I still feel top fit. I hope it stays that way.
So far nothing spectacular has happened.
In the night of day 4 of chemotherapy I experienced the first time that famous nausea everybody is talking about. It's the morning of day 5 now and I am still sick although I am taking medication for it.
Today will be my last session of the first cycles. I will have to go through three more.
If I would be in Germany I would have to go through only two more. The difference of opinion between various doctors didn't stop after my amputation. Apparently there are two schools of thought on how to treat my condition. In Germany, oncologists have abandoned the "old" method of giving 4 cycles of Etoposide and Cisplatin in favor of the "new" insight that a three cycle Bleomycine, Etoposide and Cisplatin do the job better and faster.
My doctor here subscribes to the American idea that 4 cycles of Etoposide and Cisplatin work just as well as 3 cycles Bleomycine, Etoposide and Cisplatin. But, because Bleomycine can cause, and apparently often does, long-term lung damage America doctors don't use the "old" method of including Bleomycine anymore.
- go figure.
I personally, based on a little research I have done on the net, feel that assuming Bleomycine really does cause long-term lung damage and assuming the two methods are similar in effectiveness I rather go for the no-long-term damage.
Man, chemo is a bitch.
Starting in the night after the last session of chemo I got sick. Terribly sick as in nausea. The pills I got from my doctor didn't help at all and medical THC only helped for a few minutes.
For 3 days I couldn't drink - not even water. I forced myself because I didn't want to end up in the hospital.
There wasn't much I could squeeze between by my clenched teeth and it is surprising how much of that can come back out again, so much faster, so much easier.
After three days, I got a little better.
A whiff of appetite flirted with my deprived imagination. It made me dream about a curry udon for half the night.
First thing in the morning, my poor wife had to go to Shinyuko Restaurant and get me my curry udon. Although it was slightly disappointing, my sense of taste has totally changed, it was still great.
My stomach didn't think so and for the rest of the afternoon I worked on strategies to retain in me whatever I managed to get in before.
Talking about taste. The only thing I can imagine to bring near my mouth at the moment is food of my childhood.
I can't even digest rice, mentally nor physically and I usually love it.
Maybe it is a protective mechanism.
The food you got at home was good and didn't make you sick.
Mum wouldn't poison you wouldn't she?
And now because your body is so fucked up you brain looks for the safest food of it all. Well it's a theory and I am still working on some of the connections and of course on refining some of the recipes.
Now I am almost fine. I started to eat and drink again.
But I can still only drink peppermint tea and nothing else. In the solid food department I made it all the way to chicken noodle soup.
This evening I'll try a hardboiled egg in the soup.
I almost feel a little sheepishly about that.
In between the whole mess, something beautiful has emerged. I have been getting so much thought, prayer and help from so many friends of mine. It helped me a lot and made me feel all warm inside (just when I typed this Steve Winwood was singing: "...picks me up and makes me feel good"). Especially, my family and my closest friends have been absolutely wonderful, helped me out and allowed me to relax a little about our general economic outlook and other worries.
Now at least I can lay down in my bed, relax and enjoy the side effects of my medication.
A friend of mine Al, pointed this out to me. It is amazing how many people there are that we know who lost one of their jewels for some reason. Once I posted my story people have been emailing and calling me to tell me about their own experiences. Apparently, it is almost as common as having one's appendix cut out. Ok, I am exaggerating a little, but I tell you, there are many more than you imagined and we are watching you.
Feeling much better today.
But I will still go very careful on the food thing. I'll stick to what had worked the day before. Slowly, I will start to introduce some things that are good for me like mushrooms and ginger.
Good news. My stomach and appetite are almost back to normal.
The bad news is I am having pain now. My left kidney hurts. I am not sure if it is because of dehydration or because of the cancer which is supposed to be possibly in the fat surrounding my kidney. Either way it cramps my style.
For some reason it had never occured to me after the initial pain went away during chemotherapy that I could be having pain because of the cancer. But I guess it is normal to have pain when you have cancer.
Let's see how that developes. If it is because of the cancer and it goes away through Chemo that's not bad. Then at least I one reason to look forward to the next session.
I have very good pain killers. I don't have some here and forgot the name. I will look it up later. Besides getting rid of the pain they make you feel real cozy and slightly stoned. I can sleeep like a baby on this stuff.
My hair is staring to fall out.
No, not on my head. On my ass and I am not kidding. It seems my ass is getting bald first.
I am having some pain. Not bad enough that I have to roll on the floor and grunt but discomforting enough. I can control it by laying down and concentrating on it but the moment I stop it comes back.
Forget about Atkin's and all the rest. Try chemo. I lost about 20 pounds. Although you can see that I lost some weight it is not obvious that is that much.
I got myself a huge Swiss chocolate and I can eat as much as I want he he he.
There aren't many perks in chemo. I decided to ride the ones I can identify to the extent of my abilities. Unfortunately, my wife got a cold. Now she isn't allowed to come near me. That's a major set back in the massage and getting spoiled department.
I have to get well enough that I can set up an art show for this Friday. Because of my condition there will be no formal opening but I still have to organize a lot. A very dear friend of mine and his wife just bought two of my paintings. It makes me very happy. Not only because of the money but those two paintings are also my favored and they fit so perfectly for my friends. It's like finding a good home for your puppies.
Ok, folks have a good look.
This is going to be the last time for a while you'll see me as the handsome devil that I am.
This morning I was checking my scar. There it was again that one annoying white pubic hair that has been bothering me for the last two months. I wanted to pull it for all that time but it was to close to my scar and I didn't dare. This morning it just came off. I didn't really pull on it. I grabbed some more pubic hair and pulled and they all came off without the slightest resistance.
Oh oh, I thought and grabbed a bundle of hair on my head.
They came off as easy as plugging them off the hairdresser's floor. I was surprised that they aren't all over my pillow and bed.
I went to show my new discovery to my family. Of course they got spooked out. Only my daughter thought it was cool. Actually later she came with two of her friends and asked: "Dad can you do that hair trick again?"
I'll do a few more hair tricks before I do the big one and shave all off. I guess as long as I have my trademark eyebrows that make the ladies swoon I'll be alright.
All over I feel fine. I still have pain. If I take something against the pain in my bowels it moves to my kidney and then back again. Can't catch it.
Next door they seem to torture little kids. It might not even be a kid. Something screams in a very weird way all day long. In the evening an old mentally handicapped lady they keep locked up in the basement joins in. It's amazing the things you get exposed to just laying in bed all day long with nothing else to do than to feed on the side effects of your medication.
Now when I am sick in bed all those offers and gigs are coming in.
It's like when you are desperate to get laid, not one girl even as much as looks at you. Once you are hanging out with a cute girl and you don't have the slightest interest in any other girl, they are all over you.
Some friends came over yesterday and we had a good time. We talked about healing and all the diferent belief systems that there are out there. I have quite a number of friends who are in all kinds of alternative healing and many of them want to help me. It is difficult. I don't know what I should believe in. For every website that promotes one particluar method there is another one warning about it. I am overwhelmed by it all and I decided to keep it really simple. Although I am not a great fan of conventional medicine it seems that in my case it has been working fine. There might be easier methods than chemo therapy but I know it works.
Enough of the hair trick.
I am shedding like a persian cat during spring break.
And it was time for a new look. Those blue hair were getting a little stale after a few months. With my new look came also a new vision:
I will take over this planet. But don't worry. By reading this blog you are automatically put on the protected species list.
My intentions aren't really that sinister. I'll conquer the world as an artist and photographer.
My pain is almost gone. All I did is to take a painkiller. I know it sounds pretty obvious and stupid but there was a reason I didn't want to take painkillers during the day. The painkiller, Tramadol, is giving me a good buzz at night and I can sleep well and I didn't want to be stoned all day long. But now I tried it and I am not stoned. I feel pretty good actually. Well, one problem less.
Tomorrow I will get my blood test that will tell me if I am fit enough to continue with my chemotherapy next week. Usually blood tests involve driving to a laboratory, waiting there with dozens of other miserable looking people and then getting your blood sucked out.
We found a laboratory where for a fee (US $ 2) the doctor comes to your house and does everything there. Cool.
I had a lot of visitors yesterday.
It was very nice and besides that I even managed to get quite a lot of things done. I feel pretty good and strong. Which is a good sign I guess. At this point I should feel the weakest according to how the chemicals work. 10 to 14 days after your chemo your blood count supposed to be at its lowest level. I will get the results only by tomorrow but judging from my condition everything should be ok.
I am doing a lot of research on the internet and I checked out Lance Armstrong's Livestrong website.
Now, somebody help me out here please. What is that club all about? Certainly it is not for people who still have cancer because there is no information whatsoever with regards to that on the website. Actually there isn't any information on it. The personal stories of people listed there read like evangelical, mindless enthusiasm. "I am a cancer survivor, yippeehh". Hey, I am happy for you but what is the point? The only way I can make sense of this is if their intention is to mock the guys who didn't survive.
"I am a cancer survivor and you are not, he he he"
That would put a whole new sinister twist on wearing a yellow rubber band around your wrist.
Before I start to sound too belligerent let's switch to a more cheerful subject like or example that kid that they torture all day long at my neighbor's house. This morning, like every morning I woke up because of the screams. They don't sound very human, more like a small monkey being sodomised by something considerably larger. I got up and went to the kitchen to make some tea. There were the screams again this time coming from the street. I went out hoping to be able to see the tortured beast with my own eyes. It turned out to be a little boy, a really cute looking baby boy.
Well, I am glad that at least the monkey is OK but somebody in that house needs help. Either the boy or the people who care for him.
Even if my art / photo career doesn't work out I know now for certain what I never will try to become instead - a pastry chef.
For three days I tried to create a birthday cake for a shoot. Yesterday when I thought that I was almost there, a visitor in my house asked me if I tried purposely to make it look like an ugly birthday cake.
I ordered one today at the bakery.
Day 23 August 17.
What does it tell you about your previous lifestyle that now, during chemotherapy everybody tells you how young, healthy and great you are looking.
I guess ten beer a day on average isn't that good for you after all.
For the first time I was a little bumped out yesterday.
I suppose to start my second cycle of chemo but it turned out that not only is my white blood cell count too low, my kidneys aren't functioning right as well. Now we had to move it for a week.
I have to drink fluids like crazy to jump start my kidneys. So far today I drank more than 4 liters a day.
Let's hope we get those kidneys going. If not I am in trouble. It would mean that I can't go on with my chemo. That chemo hits the kidneys hard.
Anyway I will get that sorted out as well somehow.
On brighter side, I am getting loaded with work. All good and fun projects. I am as busy as a warthog hog during mating season.
Day 25 August 19.
Things are going well.
You probably don't want to hear every detail but it seems that I got my kidneys moving again. I'll know for sure this afternoon. But the way I have been loosing fluids something must be working.
Funny I never really noticed that I don't have any pain anymore since several days. I just realized it last night seeing the pain killers laying besides my bed. I guess that's good.
My appetite is perfectly normal and I can eat anything but I didn't tell anybody. It's nice to get spoiled a little, especially if you have to GAIN weight.
I still don't have the slightest urge to drink beer even after I saw a documentary about Bavaria. Shortly after that I saw a picture of me from last New Year. Not pretty. If I ever get back to drinking beer I'll put a limit on it.
Yesterday I met another guy who had one of his balls removed. I am slowly starting to believe that we are actually in the majority.
Got quite some work done in the last days but I have to work hard for the next days as well. After that I hopefully start my next round of chemo and I am not sure how fit I will be.
And yeah, my hair stopped falling out. At least until the next chemo I still got eyebrows and hairy legs.
Day 26 August 20.
I am extremely happy. I never thought that I actually at one point will be looking forward to chemotherapy but it seems that my kidneys are well enough to go for the second round.
For a couple of days I thought that I basically have the choice of dying from cancer or kidney failure. As it turned out there seemed to have been a laboratory mistake - maybe.
I got suspicious when I received my creatinine values back from the second test and it turned out to be exactly the same as the first test a week earlier - 123.8 ”mol/L.
That is a weird number to come out twice the same. Then I read that the lab actually did the second test twice probably because they weren't so sure either. Three times exactly 123.8 - hmmmm. I decided to have another test at a different lab and that one came out at 111.1.
The confusion doesn't stop here. Since medicine is an exact science the two lab have also two vastly different "normal " value ranges. According to one I am as healthy as a beaver and according to the other I should already be smelling a little. But that is not a strictly Filipino curiosity. It is the same on the internet.
Some more good news, my blood counts are all back to normal and that was before I took some Chinese medicine to work on that.
I will go out and celebrate a little today. These days that means a tomato juice and an hour in my favored hang out.
During my research on the internet I found some interesting facts. Did you know for example that
"The urea and creatinine values found in adult Egyptian
duck by Soliman are lower than values observed in adult Nigerian ducks ..." ?
If not I strongly advice you tho check out :
PLASMA CHEMISTRY VALUES IN THE YOUNG AND ADULT NIGERIAN DUCK
Day 28 August 22.
Yes, I am back on chemo.
I had my first session today and everything went smoothly.
I was worried for a while that I would have the choice of dying of cancer or kidney failure. That is not the case anymore. Now I am worried that I might drown before that. I am already drinking 4 liters of water a day and now I also get another 2.5 liters intravenously. Between drinking and keeping my bladder in a good mood there isn't much time left to do anything else.
To give you any idea how bad that stuff is that they put in me to fight the cancer - The nurse puts on gloves and a face mask before they even touch the packing of the medicine.
I am not kidding.
Either they want to protect themselves form the harmful effects of the drug or they don't want to leave any finger prints or DNA in case they get the dose wrong.
Because of my bad kidneys the doc decided to add some more water and a diuretic to my regiment which means that my chemo has been extended to six hours.
It's too noisy to sleep and the nurses constantly have to adjust something so I am reading. Catching up on stuff which has been collecting dust on the bookshelf after I bought it. The one I am reading now is about 20 years old. The copy itself, the book is much older.
It is Herman Hesse's "Das Glassperlenspiel".
I read it in German mainly because I can, he he he.
No seriously, I read all German authors in German. Since I have the lucky opportunity it would be silly to read them in English.
It is not an easy book to read even without needles in your arm and next to two screaming TV's switched to two separate daytime shows.
Hesse has the tendency of describing situations in a very wide loop involving all kinds of aspects like historical facts, personal and other people's opinions, environmental observations and whatever else you can imagine. And he does that, at least in the German version, in very, very long sentences. Some of them are half a page long. It is not easy to keep focused on those but then he weaves in some dialog and those conversations keep me glued to the book. They give me goose bumps when they shine with brilliance which they often do.
Day 29 August 23.
Second day of chemo went just fine, nothing to declare.
My friend John Rice send me a limerick:
Andy is a man who is full of surprises
For example he has balls of two different sizes
One is so small
( Actually nothing at all )
And the other is so big it wins prizes!!!
And since John is one of the cartoon grand masters in this country he illustrated it as well. Careful it might not be office proof.
Click here to see the picture
Well, if your testicle looks like that you are definitely ready for some chemo.
I got inspired by John and during those long hours getting buzzed up in the hospital I created my own limerick:
What can I say, it's a hard life
so assured counters his wife:
is much hardener"
He left the room to get a knife
I know it's a little silly and doesn't make much sense but it somehow came to me and stuck.
My friend Torn has recently blogged and article about "country haiku".
Check out his blog while you are there.
I read it every day.
Since he is British and likes haiku I thought he might enjoy our limericks as well.
Day 30 August 24.
Third day of chemo nothing much new.
During my first cycle of chemo we left the IV in my arm for the whole five days. Now the vein behind it is hard an painful. Therefore we decided to keep it now for 3 days and change it after to a new vein.
I did get slightly nauseated after the third session and I still am the next morning. It is not so bad thought that I can't drink or eat.
I've got sodomized by constipation. Chemo does that to me.
I had a couple of business meetings yesterday and it was quite fun. I am enjoying my design work a lot more these days than before. Nicer clients and better projects. And there is some work coming in. Between other things I created a new mascot for the European International School in Manila and a jolly Bavarian band .
Day 33 August 27.
Yippeehh, done with the second round of chemo.
Although I am nauseous it is not as bad as the first time. I am getting the hang on it. I still have to force myself to drink. My brain is totally out of it though. I feel very stoned and I haven't even been indulging in any medical THC.
My doc just came back from a seminar where she heard that certain Asthma drugs are very good in preventing renal damage after chemo. So I am taking some Asthma drug now. Maybe that stuff gets me so stoned.
The main idea about this diary, besides my personal entertainment, is my philosophy of whenever I get some information from the internet I contribute as well.
And I have been reading a lot and done a lot of research on the net.
If you have a sickness you want to know as much as you can about it. And you want to hear about other people's experience with it. That's what I am doing. It's the little things, like how I bring sandwiches to chemo because it helps to fight nausea. How peppermint tea seems to work well for the same purpose and most importantly how the combination of medical THC and Tramadol makes me sleep like a baby all night through. Oh yeah and honey lemon candies work very wonders against nausea as well.
Then there are all those stories of how people survived the ordeal. I especially like the fact that so far I haven't read any body's story who didn't survive it. That is very reassuring :-) That would be one unpopular website. Stories of people who didn't make it. I bet you it won't get half as many hits as the stupid "lifestrong" site.
And just a friendly reminder so not to spoil any body's day. Testicular cancer is almost always curable.
Day 41 September 4.
Hallo, I am back.
The inconvenience of a heart attack and a few days Intensive care unit rudely disrupted my diary discipline.
I am feeling fine now and soon I will be back doing exciting things as walking up and down stairs.
It all started pretty much the same pattern like after my first round of chemo. Two days after my last dose of poison I started to get sick.
I puked like Bald Eagle trying to feed a breed of quadruplets. I swear at some point I had to shove my appendix back in. I got scared that I'll fuck up my kidneys again because of dehydration and we decided to get to a hospital so they can put me on an IV. In the emergency room somebody figured out that I possibly had a heart attack and they shipped me into the intensive care unit.
There I got pumped up with all kinds of medicine, connected to all kinds of cables, tubes and wires and then constantly being poked by some needle somewhere. I always asked what it is that they were putting in me. Just out of curiosity. Most of it made sense but what do I know. I was a little worried that there might be negative reactions by combining so many medications or therapies.
Only once I questioned their wisdom and experience when they wanted to give me a sedative and laxative at the same time.
Three days later I am back home again and everything is fine. I'll find out next week how much my heart got hurt.
But let's talk about a whole different problem I have to deal with these days. When you loose all your body hair where do you froth the soap?
And a little something on the bright side, I save big time on shampoo these days.
Day 46 September 9.
I am feeling really good. Actually better then I felt after the first chemo. I have the appetite of an elephant. We have been cooking all kinds of German delicatessen like Gulasch, Fleischplanzerl, and Semmelknoedel.
I have this incredible craving for cucumber pickled in vinegar. I finished a whole jar of it yesterday and I really mean finishing it off - including the brine. I was wondering what's in there that my body needs so urgently. According to some internet sources vinegar thins the blood. I guess that's what I need. I also had a slight craving for lobster. I like Lobster but I don't go nuts over it and it is certainly no childhood comfort food.
Of all the believe systems of healing, food is the one I can subscribe to the most. I believe that our bodies tell us what we need if you pay attention.
Just came back from my cardiologist. Everything seems to be dandy I just have to rest. He didn't have any objection for me to continue my chemo therapy. Apparently only a small part of my heart got actually hurt.
That means that next Monday I will go into round three. I am curious what it will be this time around. First my kidney, then my heart. Maybe it's time to fuck up my liver.
Taking it easy until then :-)
Day 47 September 10.
People started to stare at me because of my baldness.
It makes me conscious and a little shy.
I have read on some websites that it is a common problem and that many people, especially women resort to using wigs.
In order to overcome my insecurities I decided to get myself a wig.
It took me a long to time to find something suitable and although it isn't exactly what I was looking for it does the job. At least I found the right blue that suits me so well.
I guess you wondered about the curls. It is just a preventive measure. Many times after you have lost your hair during chemo it grows back curly. I thought I'll get a curly wig so the transition won't be as drastic when I have to switch back to the genuine thing.
Day 49 September 12.
I am starting my third round of chemo today.
With all the shit that happened to me after the first two rounds I feel a little like cattle being led to the slaughterhouse.
But things will work out. A friend helped me to get some nurses who will watch over me after the chemo in case something goes curvy.
I went to see some friends yesterday. It was a fun, small party. Although parties aren't the same if you are not drinking.
I still have to take it easy for a while.
More later. I gotta go to get needles stuck in me.
Day 50 September 13.
Several of my friends, notably the ones living abroad were urging me to go back to Germany for my treatment. Some of them even going so far to suggest that I might be playing with my life here.
I have been thinking a lot about it.
So far I don't think that it would have made a big
The chemicals they are using on me are the same in Germany and the way
they use them too.
I am not a big fan of doctors but both my oncologist
and the cardiologist seem to know what they are doing.
Both of them are overly careful and seemed genuinely concerned.
I am feeling fine, my kidneys are OK and that heart
thing wasn't as bad as it sounded. Like I said the doc
is overly careful. It was a heart attack alright but a
very minor one and I don't have any heart disease.
Everything is OK now and all my tests are normal. And
like I said, I feel like I could tear out trees.
(small, bushy ones).
In Germany I would have to stay with my mom cramped in a small
one room apartment . My friends are all very busy and too sophisticated that I could score some medical THC from them.
Here I am in a comfortable environment and I have my
family around. I have my work to keep me busy.
I am not planning to have any more complications but I am
also taking precautions.
I am usually OK during chemo and I am in a good hospital anyway while I am on it. It is after when the problem start and I attribute
it to dehydration (on top of my weakened body) because
I can't eat or drink for 3 to 4 days and I am puking
my guts out. This time around I hired a private nurse
who will be with me for the whole period and hook me
up on dextrose and anti nausea drugs. She will be
advised by both my doctors on what to do including
emergencies. We have a great ambulance service here as
well. They make it to my house in less than 5 minutes.
I am also talking to doctors in Germany on the phone.
In Germany I would have to stay in a hospital and that
is something to avoid. Chemo lowers you white blood
cell count and therefore you are very susceptible to
infections. The last place you suppose to hang out is
I will finish my chemo here, do the first round of
check up and then go to Germany for a second round of
Thank you everybody for the thoughts, concern and suggestions.
Day 57 September 20.
I am slowly starting not to like chemo anymore.
I scraped every bit of fun out of it.
This time around I was hoping to get around the unpleasantness by being really well prepared but I still ended up feeling shitty. At least nothing serious happened. Although I did end up again at the emergency ward of the hospital.
Yesterday evening suddenly my left foot started to get numb. It got worse and worse and very painful until it reached my knee. To be on the save side we went to the hospital. For all we knew it could have been a stroke. It turned out not be one and also x-rays of my spine didn't show any metastases which according the doctor would have been another possibility. It soon got much better and it is almost ok now. I never figured out what it was. It came back later but I was able to control it with a warm water bottle. The good part was, the moment the pain went away the nausea went too. I am feeling good again.
The nice of a good friend of mine is a oncology nurse and she wrote a book about
"Living Well With Cancer: A Nurse Tells You Everything You Need to Know About Managing the Side Effects of Your Treatment
by Katen Moore MSN RN ANP-C AOCN, Libby Schmais
She was extremely helpful in trying to prepare me for the shitty days. Unfortunately I didn't have any direct communication with my oncologist and things didn't get done the way Katen suggested. Katen suggested to go on Kytril every 12 hours and to boost it with some Zofran to cover it every 8 hours. And if that doesn't work add some Prochlorperazine. Initially my doc subscribed me Kytril alone and only for day time use. Then the nurses at my hospital suggested that they have the best experience with a drug called Nasea. My doc added Plasil if things get bad with puking. I had a nurse come over set me an IV and inject the Nasea. Although I was constantly nauseous it wasn't so bad that I had to vomit. It was bad enough that I couldn't eat or drink. But I was on dextrose so I wasn't too worried.
Anyway the next time I will organize it myself and follow exactly what Katen has suggested.
Now all of this sounds very dramatic but at the end of the day it is insignificant. While this all happened, the young son of a very good friend of mine died of cancer (actually coincidentally Katen's great nephew). I have been very emotional and I have been crying a lot. For my friend, his family and for the biggest fear a parent would possibly have to face.
Day 64 September 27.
It has been a while that I updated the diary, sorry about that.
I was just plain lazy.
Also I didn't feel that dandy for the first 8 days after the chemo.
There was always some residual nausea but it's not too bad.
The worst part of it all is my fitness which is basically gone. My legs are about half the diameter they used to be and I get cramps in my calves walking briskly or up some stairs. In the last three days I been exercising my legs and it is getting a lot better. It have to get better. I have a shoot in Malaysia on Friday and I have to be fit for that. I don't expect it to be very strenuous though.
The one thing I hate about chemo is that just now that I am feeling well I have to prepare myself again for the next round. Just like when you go hiking and you are really tired and exhausted but you can see already the top of the hill only to find out that there is another one just behind it.
Overall I am in a very good mood, excited about the prospect of traveling again. It has been a year and for me, somebody who is constantly on the run, that is an eternity. First Malaysia where I have never been before and then to Germany for my check-ups. Going to Germany I'll fly via Hong Kong. Basically it costs the same as flying directly from Manila. It has been such a long time that I have been in Hong Kong which I consider my second home and I am looking forward to see all my friends over there.
I always cut my trip in Bangkok on flights to Europe. For one because, I prefer to split the long trip and also I have a bunch of friends in Bangkok I am looking forward to see. And then I will see all my great friends in Germany who have been just wonderful the way the took care about me in the last months. Two of my best friends from the US are making it easy for me. They are coming over to Manila next weekend. These a great times aside from that stupid cancer thing.
I do get out and meet people. There is always an awkward moment at first. People don't know how to react or behave towards me and my sickness. They are curious and want to ask questions but are shy to do so. They are afraid that any cheerful conversation might offend me. Usually I let them hang a little, watching them as they fidget around a bit. Then, just when it gets too awkward I tell them that the good part of having lost a testicle is that now I get a 50 % discount at any strip bar.
After that, when they have tried their tears, you can almost hear a collective sigh of relieve and questions about my disease are popping up left and right.
That's when I tell them that I find it rather rude of them to talk about my problem.
Day 71 October 4.
I just came back from a great trip to Kuala Lumpur, Malaysia.
The city is like a cross between Hong Kong and Manila so I felt very much at home. I did a shoot for an advertising magazine, Adoi.
There isn't really much I can tell about KL. Great food and great roads. Unfortunately the drive on the wrong side of the road. Actually, as my friend pointed out it is us in the Philippines who drive on the wrong side of the road since almost all other South Asian countries drive on the left side.
I never looked at it from that point of view.
Of course I went to see the Petronas Towers. They don't look that tall. I do have to point out that they look really great but just not that tall. For some stupid reason they only allow you to go up early in the morning so I didn't get a birds eye view of KL.
Back to the actual cancer diary. I walked around a lot in the sun in KL which did me really good. I gained a lot of strength and I look a lot healthier.
I suppose to start chemo again yesterday but somebody at the hospital failed to inform me that my doc is out of the country for a week. I would have loved to get it behind me finally. Well it's next week then.
Day 74 October 7.
I am using my newly found fitness to get work and projects done and out of the way.
A recent exhibition of pictures of the kids at the European International School Manila turned out to be a huge success. Not a day passes by that I don't get a text or call about somebody wanting to buy one or several photos. It is actually a no-brainer. Of course the parents want to buy the pictures of their kids. Unfortunately all of them choose to buy the exhibition tarpaulins. I normally don't want to sell those because the scratch very easily and the colors don't last. That is why I can't charge much for them. At the end Joerg, who exhibited his pictures together with me and I won't make any money out of this because it won't barely cover the initial expenses. Well, we learned something again.
Mark Kantrowitz has a very detailed and informed website
about his bout with Testicular cancer. Compared to what he had to go through mine is a walk in the park. He did a lot of research and his conclusions only proof that there is no consensus whatsoever in the right treatment of cancer. He is contradicting a lot of the advises Katen Moore was giving me. (see Day 57) and both are contradicting my oncologist. Go figure.
Finally here is some proof that I really went to KL.
Day 76 October 9.
I just spent two hours reading "scientific" research on the long term effects of chemotherapy. Of course, as it is common in the medical profession there is not the slightest consensus.
Out of the ten or so articles I have read related to the subject seven came to the conclusion that Cisplatin causes considerable higher risk for cardiovascular disease, elevated lipid levels and higher body mass index in long term survivors of testicular cancer.
The other three article found no evidence for that. - Go figure
Most articles agreed though that there is a 5 % higher risk that you might catch leukemia from Ethoposite, the other poison they inject me with.
The reason I was checking these articles is that I wanted to find out why my cholesterol is so high (250) and if it has something to do with my chemotherapy. Apparently it has - or maybe not. Well it all depends which scientific research article you read. I like the ones that tell you that there are no long term effects best. But that's me.
I also noticed that apparently most people constantly check the status of their cancer through tumor markers. Besides the very first one before my treatment I never got checked. It's a little late now but I will talk to my oncologist about that.
It is my last day before my last round of chemo. I will ride this one like a prince on a silver surfboard while juggling three rather cute marsupials.
Day 80 October 13.
Two more days to go.
I really think I scratched every little bit of fun out of chemo.
In the last weeks I have been drinking a big cup of black tea in the morning. I started that during the last chemo to help me with my morning toilet countering the constipation I get during chemo.
Also during the last cylce of chemo I was more nauseous than before but in a different way. The same thing happened again and it seems to get aggrivated through the Decadron I am taking before chemo.
I suspect that it is the tea which is irritating my stomach so I stopped drinking it. That means I have to wait for my bowel movements to resume after the chemo.
Now for the next few days all those people who tell me that I am full of shit are actually right.
A couple of days ago I talked about tumor markers and why I didn't get tested regularily like apparently most people on chemo do. According to my doc and also how I understood it my cancer has very little spread. Actually the CT scan came out inconclusive. Two of my aortic lymph nodes only showed slight swelling and there was a shadow in the fat of one of my kidneys which was interpreted as a possible abscess. That means that the chemo I am doing is probably an overkill. Any results in new tumor marker tests wouldn't change the initial course of my chemo. I will get a test done afterwards and then possible next steps are decided.
When it rains it pours. My sister in law has cancer too. She got operated 7 years ago and received radiation and everything seemed to be fine. She recovered. A few years back she got one of those Filipino weirdness attacks and together with another sister in law of mine she consulted a faith healer and they produced some vodoo with the intention to distroy my wife's life. I don't know why and I am not getting involved in this kind of stuff although I found it a little wierd that she did it. After all we were the ones who paid for her cancer treatment then.
Now I have a dilemma. The cancer is back and she is back and she doesn't have any money. All bad feelings aside I couldn't just watch my sister in law die, especially not after I am only able to survive because of the generosity of others. But and that's a big but, I don't have any money too. If you have a chance to come by my show and / or check out my art on my website and maybe you see something you like.
If you buy something I'll use the money to get her operated.
Day 81 October 14.
Well that was it.
I did my last round of chemo today.
I should be delighted, jumping up and down the house but there is that little thing in the back of my mind. The bad stuff is still coming. Coming Saturday and Sunday I will get sick again and then hopefully slowly recovering until the middle of next week.
Those days will also pass as have the 81 of my chemo before. Actually they have passed incredibly fast. I hope the good times to come will take their sweet time.
And then of course let's hope that this was really it. If I am lucky I am ok. If not, I might have to go through surgery and / or radiation although it is not very likely. I am not thinking much about that. I will just rest so I am fit for my opening next Friday.
Today I was invited to join the cancer survivor group of my hospital. They want me to do some therapeutic painting with them. I was wondering about that. Those guys should be delirious with happiness and therefore don't really need therapy. It's the guys who didn't make it who need therapy. Well, then again coming to think about it maybe not.
Day 86 October 19.
Can you imagine the effect of a 100 pound sack full of wet sand has on you when it hits you with let's say about 38.4 miles an hour? That's how I feel at the moment. There was never really a distinct impact. It's more like slow motion but it still kind of derails you.
I had mentally already moved my treatment into a far corner of my brain which I generally don't use a lot when the poison triumphantly circumvented my denial and made it's presence felt all over my body. That made me mad. For the first time during my treatment I am belligerent and I don't like to be belligerent. The whole world is a lot less fun that way. It makes you cynical and that's when you find out that this whole set-up actually really doesn't make any sense.
Especially cable TV.
I am slightly worried that I over estimated my water buffalo nature and that I might not be able to work the crowd on my show this Friday.
In a few days then I will be strong enough that I can enthusiastically plan my days and travels ahead. Maybe that is part of the problem. When I went to treatment before I graciously accepted that I will be out of the game for a while, leaned back and enjoyed the intoxicating side effects of my medication. This time around I am basically booked out every day for the next months and I need to plan, to organize. My life is coming back to me before my body and brain are ready for it.
I guess that I am just sick and tired of being sick and tired.
Just a few more days.
Day 87 October 20.
I usually spent the whole day being preoccupied with the removal of painful airflow from my body. Air builds up and either makes me nauseous when it happens in my stomach or gives me bowels cramps. So every few minutes or so I have to release pressure in one form or the other. My family has been avoiding me. And they better. I have read somewhere that the chemicals in chemotherapy are similar to the poison gas they used during world war one. Basically that means that I am farting mustard gas. Better keep my family out of the trenches.
At night I lay grumbling and swearing at the cable TV, occasionally throwing a pillow in the general direction.
In all fairness I have to say that there are some tidbits of high quality entertainment now and then. They are very few and far in between. Here is an example.
Yesterday I saw an interview with a Filipino priest who performed an exorcism on the Filipino congress. When asked what he was going after he said the "Mumu". He couldn't really elaborate in any more detail what that actually is but let me tell you it's bad, real bad.
And I am glad that it is gone. Imagine what damage could have happened to the sophisticated, Filipino, political process if we would allow Mumus to run around congress.
Day 89 October 22.
Yesterday was my show at Basement Salon.
Although it has been a success many of my friends and surprisingly many who confirmed initially that they will come didn't show up.
I guess I had too many shows in the recent years.
Anyway the show was fun even though I had to leave early because I was too exhausted.
Talking about friends. I have mentioned it before but I think I can't mention it often enough how amazingly beautiful many of my friends have been, helping me out in so many ways. They are the people who made this experience a walk in the park for me. It could have easily become a terrible nightmare.
And it's not only my friends, even people I barely know went out of their way to help me.
They know who they are and they also know that I will never forget it.
During the show I was asked twice by two different people if I would be willing to advice with regards to cancer treatment. Yes, I am willing. Not that I know a lot but I can contribute my experience and help in any way I can. Like this diary. As I mentioned before. The idea of the dairy is to be a small contribution from my side to pool of information about cancer. Maybe it inspires the next person to write down their experience and after ten or twenty have done so, maybe, just maybe, somebody can make a better choice.
My friend Lamma Gung flagged my show at his webblog : Lamma Zine Blog
I hope I will spend much more time again on Lamma Island, Hong Kong the next year.
after the chemo November 17.
I know from talking to my friends and the hit counter of my website that there are a quite a number of people following my cancer diary. It's time to keep you updated. I haven't posted anything during the last months because there wasn't any news. I went to Germany to have my check ups done here. The last few days I had blood tests, Ultra sounds and CT scans done on me. I still don't have much news though. This morning I went to the hospital to get some tests done on my heart. I wanted to use the opportunity of being in the vicinity to get some results from the cancer guys. The professor who is treating me here saw me in the crowd and came over. With a very serious and authoritarian demeanor he told me that he needs to talk to me. They saw something on the CT scan. My heart slipped into my trousers like well-oiled water balloon in a garbage chute. I had to run to my appointment at the heart center and he told me that he will talk to me later. For three hours I sat at the heart clinic almost sick with fear. At the heart center they found some funny stuff during the ECG and told me that I'll have to get a catheter done to check it further. And why don't you just burn my house as well while you are at it?
So I am waiting for an appointment for that catheter thing. The good news is that I don't have any symptoms of heart disease and I should be fine.
With rubbery legs I made it to the cancer center and the professor saw me shortly after. First he said that there is a residual tumor and because of the kind of tumor that it is he might have to operate and or put me on chemo again. Then he actually checked the report. It didn't indicate the size of my tumor only that it is half the size of what it used to be. In cases like mine the size of the residual tumor is very important. I can't understand why the CT scan doc didn't include it in his report. My professor called the CT scan guy and got the size. It is 1.3 cm. That put the whole thing into a different perspective. If it would have been below one cm I would have been considered cured but 1.3 cm isn't that bad either. Then the professor noted my initial tumor marker results and those apparently told him something else, which made him change his mind about that operating thing. We are now on wait and see. On Friday I will get the results form the tumor marker tests.
If they are bad I'll get operated if they are fine I'll be on wait and see. Generally, I think I am fine but I am not totally off the hook. Tumor marker tests only take about a week here. In Manila you get your results in two hours. The CT scan guy doesn't convince me at all. He didn't even see a large lipom around my kidney until I pointed it out to him. And then he didn't include the size of the tumor. That level of professionalism I could have easily had in Manila as well.
And now it started snowing. Never mind the operation and possible chemo, the weather alone makes you wanna give up.
Just kidd'n. I am in quite good spirits and optimistic. Thanks mostly to that great Bavarian beer.
The last entry in my cancer diary, November 20.
It is f&%$ing cold here in Germany.
But luckily my mom knitted me this wonderful cap to keep my bald head warm. As the artist who still gets dressed by his mom I can consider myself very fortunate that my mom has such great taste and a terrific sense of style.
You are probably wondering what happened to all my check-ups. Well, it seems that at least for the moment my cancer gave up on me. I still have to go through monthly check-ups for a while.
I would be celebrating like crazy except that I still have to get some good news about my heart. (I am celebrating a little anyway, just to be on the save side) The chemo therapy apparently screwed around with my heart and I have to go to the hospital on Monday to get a catheter pushed into it. I might have to stay there as long as two days. IŽll keep you updated as soon as I get out.
Mmmmmhh, hospital food
One after the last cancer diary entry - November 22
It is still f&%$ing cold here in Germany.
I just came out of the hospital again. I wish those doctors would stop sticking needles in me. What made me really mad though is, that the nurse shaved off my last remaining 6 pubic hairs.
Now I look like a nine year old boy.
Although my beard and head hair have started to grow again I am loosing hair on my chest and ass. My behind is so hairless it feels like that of a girl.
Every time I touch I get horny.
The good news is that while they were doing the catheter in my heart the found out that my ateries are as smooth as a virginŽs vagina.
I dare to say that my trip to Germany was an overall success. Now I can go back to Asia and party my ass off, which I might point out is really, really smooth hhhmmmm...
The second one after the last cancer diary entry - December 14
Two friends of mine flagged me in their respective blogs.
Torn and Frayed in Manila
That's nice, thanks guys.
I am feeling a lot better. Actually almost normal. The only problem left is that I have " Peripheral Neuropathy" which is of course, as you all know, nerve damage to the peripheral nervous system. It manifests itself in tingling and numbness of my hands and feet.
Even drinking enormous amounts of beer doesn't seem to help.
Apparently it is only temporary.
That is according to half the websites I have researched.
The other half say it is often permanent.
I love science.
That's why I am an artist. Art is so much more precise and accurate.
Art and science is the same thing except one of them is pink.
My hair is growing back in all the right places.
Soon I can expose myself again without having to be shy.