This blog deals with my personal battle against eyecancer (choroidal melanoma).

Tuesday, July 30, 2013

no news is good news, pt VII

all fine. the eye is still hanging in there (excuse the pun). no liver mets, no tumour activity. perfect.

Wednesday, January 06, 2010

no news is good news, pt VI

i'm still alive and kicking. had a liver mri today, results are as good as they can be: all clear. happy 2010 to everybody.

Tuesday, August 05, 2008

no news is good news, part V

all is fine. however checkup time is coming soon. not looking forward to it, although i have a strong feeling everything will turn out fine again.

Monday, May 07, 2007

no news is good news, part IV

another mri check, another fine result.
happy.
nothing more to say.

Wednesday, November 15, 2006

no news is good news, part III

well, the title applies for me personally.
did another mri-check. thankfully it turned out fine once again.
i'm still on a six month checkup interval so i'll be 'back in the tube' in may 2007.

still it has been a bit of a rough time lately. a good working colleague is going through another form of cancer. i had some talks to help her along the way and share my feelings and impressions. still at the same time i noticed how i relived certain phases again. the fear and the uncertainty. with every answer new questions arrive. what will the future hold? etc. etc.
it's a tough ride and i hope the best all will turn out fine for her.

Friday, June 23, 2006

no news is good news, part II

everything going fine - minus the right eye which is healing very slowly. sight is up and down - but it doesn't stop me too much.

otherwise seems i'm clear for the time being. no time for cancer, will try to move on and give cancer less influence. check up time is in november 2006.

Thursday, February 16, 2006

no news is good news

my god, it's been almost a year since my last post. and this time the phrase 'no news is good news' hits the hammer right on the nail. a short rollup:

  • I went through the proposed six months fotemustin chemo therapy without any major complications. In fact I was never even sick, but I did suffer from severe fatique. Well, that's not really a problem, I just had to take it easy and sleep *a lot*, sometimes up to 14-16 hours a day. Chemo therapy doesn't have to be like going through hell alive!

  • The chemo therapy ended mid-october 2005. Now (mid-february 2006) I had a first overall checkup. And everything is fine! The liver itself in fine, liver values are fine & blood values are fine too :-) Nothing is off track.

  • The eye itself is 'hanging in there' (excuse the pun). I have lost about 50% of my sight on my right eye due to proton beam treatment. This may sound bad, but it is no real issue for me. My left eye is perfect (>100%) and over the last couple of months I got more and more used to my vision.

At the moment there is nothing to be worried about. I'll just keep up with checks in regular intervals to play it safe.

-pj


no such thing as spare time
no such thing as free time
no such thing as down time
all you got is life time...

(henry rollins)

Tuesday, March 15, 2005

(visualize) total annihilation

bad news all the way. due to the tumor size and some measurements the doctors were able to do during the tantalum clips operation it was suggested to me to add a chemotherapy for safety reasons even if no metastasis is currently visible. i should start within six weeks. it's my decision. i'll get to meet dr. v. on 11th april to discuss things.

i was hoping that after these two weeks i would slowly get back to normal and now this additional challenge lies ahead. i'm stuck in a spiral.

-pj

Sunday, March 13, 2005

images from the radiation treatment...


in order to protect the rest of the head and to fix the head in general a mask is created for each patient. the process of creating the mask was done in about 10 minutes which seemed very fast to me. the 'thing' at the bottom of the picture is a little pad which is inserted in ones mouth to futher fix the mask.


while wearing the mask the patient takes a seat in this special chair. the mask is firmly fixed to the back of the chair, making movement of the patient impossible. by bitting onto the pad further fixation is accomplished.


to ensure optimal results the patient focuses a little red led on the above board. while staring at the led the protons are fired into the eye thereby destroying and stopping the tumor. the success rate is very high, >95%.

(all images copyright psi, switzerland)

---

i had four treatment days. the actual proton beam radiation only takes about 20 seconds per day, so in total that's only about 80-90 seconds.

this machine like the complete psi seems like one big miracle to me.

thank you to everybody at the psi.

-pj




Sunday, March 06, 2005

one week...

so week one of two is over. i will never forget this week.
first the surreal tantalum clips operation which seemed fine at first. however the following night was not easy at all. moving the eyes resulted in a lot of pain. no painkillers worked, nothing seemed to help. the only option was not to move the eyes. wish someone would have told me in advance that this can happen for some period of time. i would have taken some audiobooks along. thank god the next morning the pain was slowly but surely fading away.
two days after the operation i went to the paul scherrer institute (http://www.psi.ch/index_e.shtml) for the first time. the psi operates the cyclotron machine. again a weird experience in itself. we drove by bus to the psi which seems to be in the middle of nowhere (something not easy to accomplish in switzerland). as it was misty visibility was limited. slowly but surely out of the fog, and behind a large fence i was able to see the outer parts of the cyclotron machine. this machine is large, all in all about the size of half a soccer field. and its protons get accelerated to 60% of lightspeed and are then fired into my eye. and all this for a 'little' tumor. yikes!

-pj

Tuesday, March 01, 2005

clips in my eyes

the tantalum clips operation is done. apparently all went fine. the operation is done under general anesthetics and lasted for only about 30 minutes. after waking up i felt a bit dizzy and tired but no further problems at all. on my right eye a big patch was applied which is awkward and uncomfortable to say the least. it only has to stay on for about two days so it shouldn't be that much of a problem.

i got all my questions answered in advance what this operation is all about. apparently it's a normal operation almost all patients which are going to undertake proton beam radiation treatment have to do. little tantalum clips are sewn on the eye to exactly mark the size of the tumor. later the zyklotron machine will use these clips as boundary definitions to exactly project and limit the radiation to the tumor tissue only. these clips can apparently stay in the eye after the radiation treatment forever.

sounds like science fiction.

-pj

Wednesday, February 23, 2005

reflection

this potential serious illness surely makes me think. a lot more than during normal phases of life. after long consideration i decided to cancel my visit to my good friend leslie in holland. i wanted to visit her and to see some concerts in amsterdam too. would have loved to see low and the dresden dolls. oh well, i did see the dresden dolls once back in december but unfortunately i never had the honor to see low in concert. maybe later?

i also decided to no longer pay attention to wanna-be-problems. one of the few positive things to come out of the situation i'm in. like getting upset when missing a bus. or similar little things. if you pay attention and walk with open eyes you'll notice how many people get stressed about little stuff. funny.

had a long talk together with my wife with dr. m. i'm really thankful as dr. m. takes out a lot of time for us, explaining in well thought words how proton beam treatment works, what its risk and chances are and how to deal with cancer and its possible outcome. if i should really hit an emotional low or be in massive fear i can call him anytime, i even have permission to call privately. thank you very much, it sure helps me getting through this phase. waiting can be so tough, on one hand i want to start treatment on 1st march or the other hand i want to live every minute as intense as possible. after all, nobody gets out alive out of this life.

-pj

Friday, February 11, 2005

melanoma?...

got to meet dr. s. and prof. z., recognized experts on the topic of eye tumors. to make it short: very minor good news, a lot of really bad news.
according to dr. s. there is no doubt: choroidal melanoma. very dangerous, can spread to the liver and other parts of the body. then most often lethal. it was surreal. i heard and understood what dr. s. and prof. z. said, but it didn't sink (yet). melanoma? the sound of that word is not as evil as its potential illness is. same with the word metastasis.
the good news? the tumor is clearly separated from the rest of the eye, hasn't damaged the retina (yet), doesn't affect the optic nerve or the macula. can be treated by proton beam.

a timetable was fixed immediately:

- tantal clip operation 1st march 2005
- proton beam therapy starting march 7th 2005.

i'm scared.

-pj

Thursday, February 03, 2005

so where do you go when you know that you're nowhere?

the blood values are good as well. actually they are very good, nothing is off track. dr m. at the basel eye hospital is not sure what to think of my case. it's doesn't seem clear right now what kind of tumor it is. after all eye tumors, choroidal melanoma most likely in my case, are very rare: about 6 cases out of 1'000'000 exams.

facts which are typical for choroidal melanoma in my case:
  • the size, it's (very) large (1.3 x 1.1 cm, choroid base about 2.3 cm)
  • it's pigmented (colored). apparently a typical sign for cm (choroidal melanoma)
facts which are untypical for cm in my case:
  • there is no detach of the retina at all. very untypical for cm of this size
  • on both the pet-scan and the mri-scan there is no sign of malignant tumor activity
  • the tumor is extremely well seperated from the healthly parts of the eye

so what to do? dr m. suggests - after speaking to prof. w. in germany - that i need to go to lausanne to double-check my right eye with prof. z. and dr. s. apparently nobody in europe has seen more eye tumors than prof. z.
one option would be to wait for a month and see if the tumor changes at all. i don't like that idea, i want to know what's going on and agree to travel to lausanne in a weeks time.

-pj

Monday, January 31, 2005

piece of cake

the pet-scan was a piece of cake. unlike the mri-scan the pet-scan device was not a tube but only a small ring (maybe 50cm thick). basically i had to lie on a strechter and wait till the ring completely based my body. this took a long long time, guess about 2 hours.

so after a very nervous night and more lexotanil i wait at the phone to receive the results the next morning. many thoughts are racing through my head. i feel like i'm stuck in a spiral, endlessly going forwards and backwards. thankfully dr h. already rings around 9 a.m: nothing at all showed up except the tumor in the right eye of course! no other visible tumors. a bit of good news in bad times.

-pj

Wednesday, January 26, 2005

into the void we travel...

i never had to do a mri check before. hardly knew what it's about. i know now. it's scary. you have to lie down and remain absolutely quiet. you are not allowed to open your eyes. your head is fixed. it takes about thirty minutes to do a complete mri scan of the head. that's a long time to think about what's going on. the only distraction are a pair of headphones i received from the doctors. so i go into the tube on this strechter and wait. some music from a radio station is on the headphones. otherwise i'm completely alone in the belly of the mri-beast. this machine is loud and noisy and scary. i try not to open my eyes to see what's going on and i try to listen to the music playing... i count the songs. okay, one typical song on the radio is about 3 minutes. i'm 'already' into song no. 2. 'only' approx. 25 minutes to go. it 8 a.m., time for the morning radio news. bla bla bla another bomb in iraq nn people dead. nice to hear in the mri-beast, my god. why not put in some cd with some harmless muzak? but listening to the news, the weather- and the traffic report in the belly of the mri-beast is, well, is... not exactly nice to say the least. time is ticking ticking ticking and suddenly a voice over the headphones tells me that there are only 5 minutes to go... those minutes also pass and i return back from the void of the mri-belly. of course i have to ask what's up. no answer, the doctor must look at the data first i'm being told. i beg hard that a doctor does a quick check of the data just to let me know that i'm not suffering from a brain tumor. after about twenty minutes dr. g. calls my name. he can't find any brain tumor, it's about my right eye 'only'. sigh of relief.

'however you should check the rest of your body doing a pet-scan. we can't do them in this hospital. besides your right eye your liver is my main concern now. dr. h. from the eye department will arrange an appointment for you next tuesday'

i'm scared shitless what's ahead. to calm me down i received some lexotanil tablets. i take a tablet the same evening and travel back into the void. nightynight.

-pj

Tuesday, January 25, 2005

...ultrasonic...

slept not too well. at the eye hospital i had to wait. and wait. after about 60 minutes i had browsed through all the available magazines. browsed is the correct word, i believe i didn't read a single sentence. getting in a bad mood... after 90 minutes the doctor finally arrives. 'emergency case... colleagues ill (flue time)... sorry for having to wait... hello, i'm doctor h. by the way. lets see what's going on here...' so i sit down, more atropine drops, more waiting. then finally some viscid liquid is put on the ultrasonic device. carefully my right eye is being examined with this 'pen'. i ask what's going on but no answer yet.

'please be patient and hold still'

(...)

(...)

'this is not looking too good. there is 100% some form of a tumor or bleeding in your right eye. it's about 1.1 x 1.3 cm in size'


(...)

'that's very large'


(...)

'your left eye however is totally fine. i need to reach our tumor specialist dr m. right now. he needs to see this and decide where to go from here. please wait.'

doctor m. seems weird at first. he looks at the tumor for about 10 seconds, then asks me to leave the room. after waiting for about 15 minutes i re-enter the room. suddenly there is not only dr h. and dr. m. present but two additionally doctors. they are all looking at the tumor with the examination device. i'm asked to leave the room again.

what on earth is going on?

i'm asked to re-enter. only dr. h and dr. m. are present. dr m. starts to explain the situation. they are not sure what form of tumor is present. it can be harmless, it can be very dangerous. it can be only a bleeding. i will have to undergo many medical checks asap. mri, pet-scan, ct, blood values. then we can decide the next steps. i'm getting all nervous and for the first time i realize...

...i might have cancer...

'dear mr. j.
did you forget things more often in the last couple of months?
do you have stomach problems when you eat cheese?'

Monday, January 24, 2005

the day everything became nothing

my right eye started flickering at the beginning of 2005. today i called the eye hospital to ask if they feel it's necessary to check my eyes. the answer is yes.
in the waiting area many people were.... well, waiting. many of them bruised up. black and swollen eyes, blue and swollen eyes, plastered eyes. one guy looked like he was beaten up really bad. so what am i doing here?

the doctor calls my name and checks my eyes. seems like the retina in my right eye is detaching. damn... to be safe he puts some atropine drops in my eyes to expand the pupils. waiting time again, takes about 20 minutes to fully expand the pupils. another check.

"so doctor, what's going on?"

(silence...)

'well... it's not the retina...'
...it looks more like there is a tumor or something similar in your right eye"


(...)

'we need to do an ultrasound check tomorrow'


(...)

and i thought i'll go home with some eyedrops.

-pj

Sunday, January 02, 2005

welcome....

this is my personal blog. i'm not special. not more than you, guess not less than you. this blog mainly deals with my personal battle against cancer.

cancer can affect everybody:
poor/rich
woman/man
baby/adult
young/old
kylie minogue/myself
black/white

so why argue about the color of skin when grey is the state that i'm in?

-pj