Day 21 - 23

Nothing special the last few days except that I've been sick on top of the radiation. Today I met with the radiation oncologist too. She said the side effects are in line with the dose. Sounded funny but I guess it's ok. I have 10 more days to go. Will be interesting to see how quickly I recover from the cold.

Day 20

I'm just tired. Need to do lots of eating before day ends. Hey - is there nobody who can eat for me?

Day 18 & 19

Two days, two computer crashes and one time I almost freaked out. On Friday the computer crash took 5 minutes to fix but today it took 15 minutes. I was ok with staying put for most of the time. It's not easy if you can't move at all, can't open your eyes, can't turn anything above your chest. With the head mask on I just can't move and I have to wait until the angels release me.

Usually one radiation therapy takes 12 minutes but today it took 1/2 hour and that was to much for me. At the end I really felt uncomfortable but hey - I'll clear my memory tonight and day 20 comes tomorrow.

The radiation-oncologist seems to be hard working too. She answered my email over the weekend and told me, that the control CT have shown that the lymph nodes are showing damage. In size they've remained so far but she said this isn't important. I've asked back if damaged is a good sign and she said: "damaged is very good, meaning the remaining cancer cells most likely won't be able to divide anymore.

Wow that is good news. Bad news is the condition of my tongue. It looks really alienating to me. Can I buy a new one? It's swollen and infected. I'm not surprised but I still don't like to think much about it. I don't take painkillers right now.

Don't want to write about what I eat anymore. Just thinking about eating makes me feel sick a bit. It's not a pleasure and I look forward to other days with regards to that.

Running is still going well. Did 13 km today in 58 minutes and 250 meter inclination.

Day 17 - double it and cross off the first half

It was a busy day. It started with a control CT (computer tomography) at 9:30am, followed by a radiation, followed by acupuncture at my friend's place and ended with a second radiation session at 6pm.

I'm still losing weight and had to increase the liquid food dose. Strange enough the swallowing pane has almost gone away but appetite is low as ever. Don't like yogurts anymore and eating bread is a time consuming effort. My body wanted raw meat today so I got myself a "steak tartare" for dinner. It seems to be snotty to eat steak tartare even though you can't really taste it but I've reached the point, where I give my body what it's asking for.

Most likely because I was busy all day long I didn't feel fatigue until now. No running today but 10km yesterday and some biking planned for tomorrow.

Breakfast

• 2 slices of bread with jam
• water
• liquid food

Lunch

• some vegtables and risotto
• liquid food

Dinner

• stake tartare
• apple

Day 15

Session 15 was happened yesterday. The sessions have moved from the afternoon to the morning. Before the session itself I had a quick chat with the radio oncologist. She was happy with my status but referred to the control CT from tomorrow to get more insights about the current status. Eating and weight continues to be the main concern of everybody. I lost my interest in yogurt .-( and eating kiwis is a torture but I want them.

In the waiting area I've met a women and a men. Both of them have to deal with thyroid glands tumor. Both of had their primary tumor being removed mid 90s and only after the third recessive comeback they went for radiation. The women had just completed her treatment, the men just started his.

We made a conversation for about 10 min and shared each other our history. It was really great to see how other people cope with it. They both were very positive about it and seemed to be rather happy people - great inspiration for me.

proj on

Day 14 - how to prevent a lightning storm in your mouth

Every morning and evening I have to put these braces on. They are tailored made for me and before putting them on I smear one of two lotions on them. The lotions are to treat the dental enamel.

Funny enough I also need to wear the braces during radiation. Today I've asked why. Turns out that without them the radiation of protons can turn into electrons and cause a small lightning storm in your mouth. Of course I don't want that to happen. Uff - I hope I don't forget them ever.

The weekend helped me to recover. Today felt better than last week. I'm sure the weekend helped but I recovered better than a week ago. Maybe this is thanks to the acupuncture therapy I've started on Thursday. The idea is not to fight cancer with acupuncture but to ease the negative side affects caused by the radiation. The therapy is divided into two parts: acupuncture for 30 min followed by a massage for 60 min.

I don't understand most of what is going on with this cancer and the radiation and why my immune system couldn't kill the cancer cells. I also don't know if I ever will be healed fully, although I'm positive about it. I know though that no matter what, I'm still alive and there are ways to improve quality of life. In physical but also in a metaphysical matters. I feel it's my job to explore them and that's what I'm doing.

I think I've also figured out why I lost some weight even though I forced myself to eat a lot. It must be related to an insufficient supply of Cortisol. I may talk about this later but just in short - my body doesn't produce any by itself and I need to substitute it. During times of greater stress one should increase the dose. I may have not increased it sufficiently. The risk of suppressing my immune system with too much Cortisol was too high for me, so I kept it low on purpose.

I ran 16km today. Could eat without painkiller but had to take a sip of water with every bite. Didn't eat enough. Tomorrow is number 15 and on Wednesday is maintenance day. Because of that I'll have to do two radiation sessions on Thursday.

Breakfast

• one cup of coffee
• croissant with jam
• four slices with bred
• yogurt
  

11 o'clock

• liquid food from the doctor

Lunch

• Pasta with tomato sauce

Dinner

• cornflakes with milk
• water melon

Day 12 and 13

The position of my head, neck and tongue needs to be the same for every session. Head and neck are controlled by the head mask. For the tongue they've given me a piece of durex which gets hard after a while. The ceremony for each session is the same:

• I walk into the room
• "Hello Mr Scherl". "Hello together"
• I take off my shirt
• They cheer me on because of my athletic body (just kidding)
• I lie down
• I get the mouth piece
• They pull over the head mask and fix it
• They bring me into position
• They leave
• 10 fields are being radiated
• They come back and pull off the head mask
• I return the mouth piece
• Get up and get dressed
• "Good bye". "See you tomorrow"

The last two days I took some liquid food for the first time. It's ok. Not a gourmet dinner but honestly I don't crave for one right now. My body craves for citrus fruits, water melons and cucumber salad. Because some of the food burns right now I make my tongue numb from time to time before eating. Doctors say my tongue reacts above the norm but not extremely. They want to keep the dosis as is and do a control CT next week. I look forward to the control CT - the most positive result would be that my tumor responds to the radiation and the positive lymph nodes are getting smaller. Worst case - nothing changed. Absolut worst case but unlikely - the lymph nodes got bigger.

Breakfast

• bread and jam
• tea

11 o'clock snack

• liquid food

Lunch

• cold vegetables, some fresh cheese and some couscous

Dinner

• noodles and some chinese vegetables

I couldn't exercise the last two days but will go for a run or biking tomorrow. Didn't sleep alot from Thursday to Friday but was in a better mental shape on Friday. Eating is actually more eanking - I take a sip of water for every bite to make swallowing easier.

Day 11

In addition to the session I also met the radiation oncologist. Her only concern was my weight. She also mentioned I should make sure to not lose any weight. I got some fluid drugs for local anesthetization. I can take it 5 minutes before eating. It will make eating less painful. 

I also was told to not go swimming anymore. The skin gets irritated and I should not irritate it further with water and chemicals. The risk is, that I'll get some open wounds on the neck. The norm is to have at least something like a "sunburn" and I should make sure I stay with the norm.

Breakfast

• three slices of bread and jam
  

Lunch

• potatos
  

Dinner

• ham and eggs
  

Day 10 - one trauma on top of the other on the of the other ..

It's tough if you don't feel any immediate pain but feel more and more tired every day. Maybe today wasn't such a good day because I had to acknowledge I'm losing weight - 2 1/2 kg so far. I thought I'm eating a lot but apparently not enough. On top of it I had no appetite today and even without mentioning anything my neck, nose and ear specialist, whom I met today again, preached to me I should eat as much as possible. Independent of my appetite and if I can't eat enough I should get liquid food asap. With a smile he advised to drink the food cold because it wouldn't taste.

As said my tongue tissues are irritated - it's called mucositis and I've already reached grade 3 out of 3. On a positive note , my throat isn't infected yet. He also believes that the knot in my tongue (stopped being painful a few days ago) might most likely not be a remaining tumor. He was talking about a salivary gland in the tongue that might have become irritated from the surgery. Hmm, I didn't know there is such a gland in the tongue itself. Need to check on this.

He also mentioned: If I would respond to the radiation therapy the lymph nodes in my size (1 cm x 1.4 cm) will be gone most likely after 2/3 of the therapy. This is all based on past experience and might be different from case to case.

Tomorrow I'll see the radiation oncologist. I'm still keeping the work out up. Yesterday I went for an 15km run with 450m alltitude difference. While I'm working out I feel great. The good feeling ususally lasts for two hours post the work out.


Breakfast

• 3 slices of bread with jam
• yogurt
• 2 cups of green tea

Lunch

• nothing

Dinner

• muesli
• 1 slice of plum cake

Day 9 - you are not the only one

After two days without a session it's a bit harder to get back into it. Nine sessions are done but knowing there are 24 more to come and understanding the impact is exponential I have to admit I'm a bit worried. I was able to recover a bit over the weekend but I often feel tired. On Saturday I got up at around 8:30 and felt tired all day long until I went biking. Biking went well - I'd say I'm able to perform at 90% of my regulare pace. I maybe did 30 km at 1200m alltitude difference.

I still can taste some of the food but it continious to change. The eating is ok - unfortunately swallowing starts hurting. As expected with my condition the oral flora is getting damaged quicker and candida is spreading rapidly again. Over time my candida has developed full tolerance for all regular anti-fungal agents. There are only a few options left but since I'm experienced with candida, I can get the medication I need. I've decided to do a 5 day Cancidas treatment. As always these drugs are extremly expensive at the beginning. A 50 mg dosis of Cancidas costs CHF 900 and lasts for one day. Cancidas is taken as an intravenous infusion. Lucky enough I've convinced doctors long time ago to allow me managing these infusions myself. Imagine I would have to go to yet a different doctor for this too. Let's see how candida looks in a few days. It's not uncommen to get a candida infection during radiation but usually you can control it with Ampho-Moronal or Diflucan.

Initially I believed to be one of just a few people who have to undergo oral radiation treatment. I was taught differently. In Zurich they have more than 30 patients every day on the same system. Most of them are older than me. Some of them (including me) walk in and out like picking up some medication at a drug store. Others come in wheel chairs and others are being brought down from the sleeping rooms in their beds. There isn't much talking between patients. I guess no one wants to be a sick man under sick men - I for sure not.

Today before I was asked to enter the radiation room an older man just left in his wheel chair. We looked at each other for a second, turned our faces and a few seconds later looked at each other again. We smiled - not a "hey how are you doing smile" - more like a smile between two kids that just have been caught doing something forbidden. He already got his lecture and I'm just about to get it. Of course we didn't do anything forbidden but it doesn't feel right to be there and maybe that explains why people don't want to engage too much.

Breakfast

• 4 slices of bread with jam¨
• two cups of green tea
• one yogurt
• one kiwi

Lunch

• fish and vegetables
• some rice and some couscous

Snack

• tuna sandwich

Dinner

• fennel & fish & risotto

Day 8 - session 8 on 08/08/08: if that isn't a good sign

Loosing taste? It's day 8 and for the first time I've felt as if food starts tasting differently. Today I had a session at 08:20am. I don't feel as tired as yesterday even though I got up at 6am. Despite of the losing taste sensation or maybe just because of it I treated myself with a great birchemuesli at Spruengli in Zurich.

Looking forward to the weekend without any sessions. The pain in the tongue is a little bit less than on previous days.

The therapy goes on and hopefully leads to a full destruction of all tumor cells. In addition to this process I'm reading more about complementary treatments and efforts. I'm dealing with the cancer for more than three years now but so far, I haven't changed my way of living. The three years can be divided into three phases:

• initial diagnose and treatment
• active lymph node on the right side and removal
• recessive come back with three bigger surgeries including lymph node removal on left side and radiation

If the third phase has anything good about it, than it should be that I improve my way of living. With improving way of living I pretty much mean becoming more aware. Something I wanted to achieve for a long time but never worked on hard enough before.

Breakfast

• yoghurt drink
• 3 slices of bread with butter and jam

9 o-clock snack

• birchemuesli see picture
• of course some green tea

lunch

• tomato mozzarella salad
• pork steak and potato salad

dinner

• another tomato mozzarella salad

Day 7 - still tired

Yesterday evening I went for a 14km run. Couldn't observe any big change in terms of my endurance yet. Regardless - I feel tired during the day and it's an annoying feeling. Only after an 1 1/2 hour nap in the afternoon I felt awake. Maybe it's because of the weather maybe because of the radiation. Will continue to observe.

My taste and appetite haven't been affected yet. I didn't lose any weight so far. I'll try to list what I'm eating at the end of each post.

My mucosa is definitely getting irritated. Candida starts showing more aggressively. Eating though is still ok.

Yesterday dinner

• fennel
  
• zucchini
  
• chicken breast

today breakfast

• yoghurt
  
• 3 slices of bread with butter and jam
  
• 2 cups of green tea

lunch

• tomato mozzarella salad
  
• vitello tonato
  

snack

• sandwich
  
• mango yoghurt drink

Day 6 - nothing special but a bit tired

Don't know if it's the weather or if it's the radiation but I'm feeling tired today. I'm not going to take it like that and will go for a good run later in the evening.

My tongue still hurts and I'm taking some painkillers. The next few days will be more or less routine. I'm at a point where I just have to do every day like a have to pay a toll. On Monday my neck, nose and ear specialist comes back and I'll discuss the PET with him but no special activities are planned.

I'll use the time and work on improving my eating habits. My body craves for more vitamins and vegetables. Instead of having only three meals, I need to carry some smaller snacks with me too. I know it sounds crazy but I'll also do a test for food allergies. I've always wanted to do this IgG food allergy test but never came around it. Traditional medicine doesn't believe in it but I strongly believe that certain type of food isn't beneficial for my well being and well being counts more right now.

Day 5 + talk with my radio-oncologist

Today was a totally new experience with the radio-oncologist. It's a she and she was really talkative. The session was scheduled for 15 minutes but we ended up spending 45 minutes.

First we looked at the results from the planning CT and there is really a lymph node in level 3 on the right side that is very suspicious. The size is 15 mm x 10 mm. Even though the node still has a good shape (oval) the shade is making it suspicious. The expectation is that radiation will kill it. Once more I've asked how the killing can be tracked. My radio-oncologist said that a new CT maybe 6 weeks after finishing the radiation will tell. Why waiting so long? Wouldn't a check just after the end make more sense? As said previous the impact from radiation will go on beyond the end of the therapy. Today she also mentioned that most oral tumors react positive towards radiation. It's not always that the tumor is fully being killed but in all her professional time she has only seen once that an oral tumor continued to grow while doing radiation. She was talking about more than 500 treatments.

I've also asked her to look into the PET - wanted to see if we could see and confirm what I feel is a left over in the tongue. Unfortunately they PET people didn't load all the images. Will find more next time. Anyway - my initial thought of doing a little surgery while doing the radiation was dismissed. Not possible. In that case it doesn't really matter to see the PET. I can sense a strange feeling in the tongue and will continue to observe it. Most likely this knot in the tongue is pressing against a nerve and that causes the only pain I have right now. Unfortunately the pain is got more intense and I have to take pain killers. I'm using Ponstan and Novalgin. From all what I know I now still have some tumor left over (lymph node third level on the right and knot in the tongue). Somehow concerning but not really different from the start - we thought this is the case and thus we've decided to do radiation.

Today was also the first day I've felt somehow tired. It's getting better since I had lunch. I'm trying to exercise every day but can't do it today. Although I had time between my two sessions - the indoor pool I wanted to go swimming was closed I didn't have my running gear with me.

Besides the pain in the tongue and feeling a little tired everything else seems to be still OK. I can still taste food as much as before beginning the radiation. Most likely this will change in about 3 - 5 sessions from now. My saliva is still OK too.

Today I've also read an article about alternative treatments. Obviously this is very controversial. My take on it is that I don't want to replace my current treatment with alternative treatments but I'm interested to see how I can complement it. The idea is to make the whole thing to be less painful and to improve overall quality of life. An interesting source on the net is www.cam-cancer.org. From what I've read so far - this is more than just todays article - people seem to feel green tee has an overall positive affect. I like green tea - so that is fine with me.

The article also mentioned a book from Gerd Nagel, once a very successful oncologist and later leukemia patient himself. "Krebs, was man fuer sich selber tun kann"

Less enthusiastic about positive affects are experts with regards to: Mistel injections. Nagel states the fact that neither negative impact has been found so far. Another useful source about this alternative treatments can be found at Lukasklinik.

Number 4 - done!

Today I had two appointments. One for doing the radiation and the other one with the dentist. While doing radiation I'll have to see the dentist once a week too. One side affect of the radiation is that the jaw-bone won't be supplied with sufficient blood circulation. Infections can lead to a destruction of the bone. Thus it's very important to keep everything under control. This is also the reason why before radiation can begin, teeth need to be checked and fixed  if required. The dentist was happy with what she saw.  

While doing the planning CT doctors have found suspicious lymph nodes. They are located on the right below the middle layer in the front. Today I thought I've felt them to be bigger than usual. Most likely left overs from my last surgery. We had removed about 25 lymph nodes on the left side end of June 2008. Somehow the entire middle layer in the front on the left but we'd also removed 5 on the right side - a little bit lower than the middle layer. As said in a previous blog, in January 2006 the middle layer on the right was already removed. One has more than 200 lymph nodes in the neck. So no worries if they remove 50 - 80. Unfortunately you don't really know the path of the lymph drain. Even though the right side has been removed, drain from the left must have flown over to the right. 

Doctors always said, don't worry when a lymph node hurts. It seems to be a good sign. What they mean is that the node hurts because there seems to be an infection and most likely the node is swollen because of the infection. They say a tumor positive node doesn't hurt. In my case they always hurt. My theory is that they become active once there is an infection. I'll discuss this theory with the guru oncologist once he contacts me again. The oncologist isn't the same person as the radio-oncologist. So far I've treated my cancer with surgery and radiation. Mostly I've been in contact with a neck, nose and ear specialist and the radio-oncologist. Friends of mine also have arranged contact with a guru oncologist who has agreed to look into my case and discuss findings with me. He has contacted me once over phone and apologized for not calling me earlier. He said he has looked into my case but needed to do some more research. Radiation is the right next step he said but if the tumor keeps being recessive there might be an anti body therapy. He didn't know enough about it back then and promised to call me again. You might wonder why there is no formal commitment -  I'm not his patient - he is doing this as a favor to the neck, nose & ear specialist and he seems to be dammed good.

So I guess the nodes I've felt today might be the same as the radio-oncologist have seen on the CT. I've a session with the radio-oncologist tomorrow. Interesting enough I haven't seen here since the first discussion. She was on vacation and I'm scheduled to see here only once a week. The radio sessions are all operated by other staff. 

More about all that after I've seen her tomorrow. 

Real third day: almost routine

No radiation yesterday due to Swiss national holiday. I guess it won't be as simple going forward as it is right now. The side affects will kick in but so far I'm still keeping up quite well.

The picture I've attached shows the system. It's pretty big. The head unit shown on the picture is directly over my head. It can move almost 180% degrees to the left and right. 

In two days I'll see  the uber doctor. Hopefully I'll get more useful information.