Wednesday, November 30, 2005

Day 45 – Harry Potter

Last night was actually a bit better. I only got up twice (04:00 and 06:00) with coughing fits. Desney’s been sleeping in the guest room, which is a bit depressing for me as I obviously miss her in bed, but she needs her sleep as she’s doing absolutely everything in this house and still finding the time to take care of me.

I had an early radiation appointment today so I hurried through the morning and was ready to go by 12:30. I didn’t have any lunch but I thought I’d grab something afterwards. I arrived on time for my appointment (13:00) and they were only slightly late. I was finished by 13:35. I told them I needed to see the doctor for my weekly appointment and they had me wait in the waiting room. The assistant came out about 10 minutes later to tell me that the doctor would be arriving until about 15:00 and I wouldn’t be able to see him until about 15:30 at the earliest. Wouldn’t it be better to see him tomorrow? I certainly wasn’t going to sit around in THAT waiting room for a couple of hours after my treatment especially as, for once; I actually had plans for the afternoon.

The best laid plans of mice and men… Today is the opening of the new Harry Potter movie (Harry Potter and the Goblet of Fire) in France. I promised the kids I’d take them if I was feeling up to it. The plan was that I would have my radiation at 13:00, see a doctor by 13:45 and be home by 14:30. We’d then go see a showing of the film sometime around 16:00. I’d pick up Alexandra and Jessica from home and head to the cinema.

A brief paragraph for the foreigners in the audience: Foreign films, and television shows for that matter, are shown in VF (version française – dubbed in French) throughout France. Luckily for us in Paris and the Paris region there are certain cinemas where we can sometimes see films in VO (version originale – original audio track with French subtitles). However not all films are shown in VO, especially children’s films, and they’re shown under special conditions (particular times, days and theatres). We (the Erbs) see all English-language films in VO even if it means we don’t see them in the cinema and have to wait for the DVD.

The first part of the plan that fell apart was the show time. The theatres showing Harry Potter in VO had times of either around 15:00 or around 17:30. Nothing in between. We therefore decided to rush to the 15:10 showing at the Porte de Clichy which is relatively close to the house. I got home in time and Alexandra had gotten home, after her English class, had already had lunch and was ready to go. We left in the car at 14:30 having told Jessica to meet us at the cinema. Normally it should have been about a 20 minute drive at the maximum. Of course today traffic was just ridiculous! We arrived in the 17th, actually just next to Jessica’s school, at 14:55. We weren’t even half way there by then. By absolute coincidence Jessica actually crossed the street, to go to the métro, right in front of us. Alex recognised her, she jumped in the car and we headed off. More traffic through the 17th and we arrived in front of the cinema at 15:10. I dropped the kids off to get the tickets and looked for a parking lot. I found one in about 5 minutes. In the meantime the girls had tried to phone me about 4 or 5 times. But as I was underground in the parking lot I couldn’t answer. When I got out of the lot I called them only to find out that the move was sold out. I hadn’t expected that for a VO showing in the 17th… even on the opening day. But Harry Potter is Harry Potter. I went to go pick them up at the cinema and take them back to the parking lot to head home. In front of the cinema we met Kathleen, one of the parents who I work with in the parents’ association and someone who is very close to me, and her son. They too were headed to see Harry Potter. They had same sort of special tickets so they waited for the next showing. It was a very strange experience seeing someone who knew me “back when” (i.e. pre-cancer).

We made a few phone calls and Desney agreed to let us go see the next showing on the Champs-Elysées at 17:30. We piled in to the car and got to the Champs-Elysées in about 15 minutes, parked in about 5, walked to the theatre in 10 and bought our tickets. We were now the proud owners of 3 tickets to see Harry Potter at 17:30. It was about 15:45 at the time so we basically walked around the Champs-Elysées, stopping in to the FNAC for a while, and we headed back to the cinema early. It was a good thing we were early for quite a lot of people had started queuing upstairs. I grabbed and sandwich and got the girls popcorn and soda and we got great seats.

I must say, in my personal and rarely humble opinion, I felt the movie was the best of the four. New director, new style and very much a kids’ action / adventure movie. The kids are even getting better as actors. It was great fun and a big long.

We headed home and the kids practically went straight to bed. I went to bed as usual, after midnight, and alone.

The Telephone

This is an appeal to everyone. Please stop calling me on the telephone (home land line, office line or mobile phone)!

My voice is now below a whisper and I have to really shout to be even fainly heard on the phone. Oral conversation rapidly becomes quite painful and extremely frustrating for both parties.

E-mail works fine as does the comments section here on the blog. I also can sometimes be found on MSN Messenger with my old e-mail address ( or on Yahoo Messenger with my Yahoo account (dce42). I can type just as fast as I speak so instant messaging works fine for me. However plesae do not assume that because you see me online in one of these IM programmes that I am up and ready for a chat. Sometimes I just leave the computer on...

Tuesday, November 29, 2005

Day 44 - Back to the clinic

Last night was probably the worst. I had coughing fits almost hourly and they were really very painful. Coughing and wretching both really hurt my throat. I just wish it would stop...

I got out of bed around 9:00 trying to get at least the slightest bits of sleep in bouts. I took all morning getting breakfast down, my medicine and getting ready. By the end of the morning I had to grab a very quick lunch (a sandwich from the local bakery) and dash off to the clinic.

The clinic has 2 radiation therapy machines. One on each side of the building. "My" machine is the one on the far side. Today my machine wasn't working. They were therefore running very late as they had to squeeze both groups on to the one machine on the near side. I arrived 5 minutes early and ended up waiting an hour and a quarter before my treatment. As the team working on this machine is different from the other team I couldn't get my schedule planned for next week. As everything was running late the doctors were running late as well. I wanted to see a doctor about the coughing, the spots on my tongue and the constant pain. However I was told I would have to wait another hour and a half to see a doctor. I went home.

The pain and dryness increased after today's treatment. I sometimes get the feeling someone's trying to test me with all of this to see just how much I can stand.

"Still here?"... "let's try giving some more then! We'll see if you come back."

Desney prepared a delicious steak and salad. I could eat the steak, albeit embarassingly slowly, but the sauce on the salad burned my tongue and throat.

I spent the evening watching TV shows I had recorded from BBC Prime on to the computer (Down to Earth and good ole Ballykissangel).

Monday, November 28, 2005

Day 43 - 4th Day Off

One thing I'm starting to truly realise is that all of this certainly isn't going to stop the day after treatment stops. It's been 4 days now that I haven't had any treatment and I certainly feel a lot worse than I did 4 days ago. The pain has increased both in intensity and in regularity. It's obvious that when the treatment ends, in less than 2 weeks, the pain is going to increase before it decreases. Just something else to look forward to.

I didn't get a lot of sleep last night. I have coughing fits throughout the night about once every hour or hour and a half. I was therefore pretty tired this morning even though I didn't get out of bed until about 09:00.

It took me all morning to get through breakfast and medecine and such. That just brought me to lunch.

After lunch I had been hopeful to go down to my office and get a bit of accounting done. No such luck. I just didn't have the energy for it. I hung out on the couch all afternoon doing practically nothing (TV, book (Cauchemar dans les Côtes de Nuits), Sudokus, ...). I didn't actually sleep as I wanted to be good and tired for the evening.

Desney prepared dinner, as always, and it was delicious. It's getting more and more painful to eat but I am still getting food down. It just takes me a lot longer.

There was nothing on television as usual. As Springsteen predicted "57 channels and nothing on"... well we have a lot more channels than that and still nothing on. I zapped back and forth most of the evening.

Sunday, November 27, 2005

Day 42 - A relaxing Sunday

I wish I could say that every day gets better. Unfortunately it's the opposite: every day just gets worse.

  • My red neck is now burned brown.

  • My coughing fits are now both at night and during the day with the extra added delightful feature of wretching up saliva every now and then.

  • Swallowing is beyond painful and my throat constantly hurts.
    The dryness in my throat is such that it's sometimes even hurts to breathe.

  • My voice has gotten worse and worse to the point that now if I scream it comes out a whisper.

As it's Sunday I slept in a bit. Alexandra even slept in a bit. Jessica had gone to a friend's house last night to sleep over. I spent all morning having breakfast and getting clean.

For the first time in quite some time I actually went down to my office and sorted through some paperwork. I mostly did what absolutely had to be done and left it at that. I am very frustrated by the fact that I can't concentrate too long on any one project. My mind wanders and I can't remember what I'm doing. Programming is therefore impossible. Bookkeeping is about as far as I can get and even then I have to total up about 3 times.

In the afternoon I had a nap and then Desney made pork spare ribs for dinner with potatoes and carrots. I was able to eat everything, albeit with difficulty, and watched as the rest of the family had a bottle of Fleurie to wash it all down.

E.R. has finished here in France so we had to find something else to watch. We ended up watching Capital which is a show we used to watch regularly before E.R. was running. It's a news show based on the French economy. It's extremely well done and we've been watching it ever since their first season. Now we just miss Culture Pub which used to be on afterwards and which showed television adverts from all over the world many of which were absolutely hilarious.

As I started yet another coughing fit again at about half past midnight I crawled in to the bed in the guest room to allow Desney to get some sleep. She's got work tomorrow, of course, and I've just got to try and get through the day...

Saturday, November 26, 2005

Day 41 - A real day off

After a few nights of not getting any sleep and coughing all night I had a good look at the painkillers I have been shoving up my ass. I checked out the ingredients: 500 mg of Paracetamol (fine), 15mg of dried opium (bring it on!) and 50 mg of pure caffeine (what the???). It clearly says on the notice inside that these are not to be taken at night due to the large quantity of pure caffeine. What was Dr. Kanoui thinking??? I then checked out the effervescent painkillers I had been prescribed after my surgeries: 500 mg of Paracetamol (same), 30 mg of Codeine (not quite the same as dried opium but it'll have to do) and no caffeine. I took one of those last night and slept straight through to the morning.

Awoke with my standard coughing fit. But within a few hours I was fine again. I caught up a bit with my e-mails where I could and did a bit of bookkeeping.

I had a couple of tuna and avocado sandwiches at 15:00 and passed out by 16:00. I didn't get up until after 19:00 which was actually not such a good idea. I obviously needed the sleep but that was too much daytime sleep.

Desney made a chicken curry for dinner which was quite tasty. Afterwards I watched a bit of X Files on DVD and went to bed late.

Friday, November 25, 2005

Day 40 - Au revoir Arlene

Another loooong night.

I woke up on the couch having coughed throughout the night. It took me all morning to get breakfast down along with my medicines and getting showered and everything.

By the time I was ready it was just about lunch time. Arlene and I went out for a last meal at our local restaurant (Le Madrigal). It was not a happy time for either of us.

When we got back from lunch I called her a cab and got her absolutely enormous bag down the stairs to the taxi. Off she went to the airport to fly back to New York.

After Arlene left I slept all afternoon. Emma was cleaning the house so I hid in our bedroom. I got up when the kids got home after 18:00.

In the evening we watched Star Wars III - Revenge of the Sith. We all agreed that this is by far the worst of the 6 Star Wars movies. Whoever told Hayden Christensen he could act should be shot. However Jess, and her girlfriends, find him terribly sexy. Eating pizza in front of the television we felt like a true American family.

After the kids went to sleep I watched the second DVD which has all of the "Making Of..." documentaries and background information. It was much better than the movie!

Thursday, November 24, 2005

Day 39 – Salon du Vin

La nuit fût longue.

[It was a long night as we say in French]. I got to bed about half past midnight, as usual, and almost immediately started coughing. That lasted for quite some time and was quite painful. About an hour later it started all over again. I ended up putting myself to sleep on the couch so Desney could get some sleep. I spent the entire night coughing. I would have an attack for about 10 minutes every hour throughout the night. This was with the painkiller stuck up my … and supposedly calming things down. It was a long and tiring night.

I got out of bed (couch) early and took a shower to get ready to go as quickly as I could. Desney and I left at about 10:30 which is very late for us normally when we go to the Salon des Vignerons Indépendants. Normally we try and get there for 10:00 for the opening. The traffic around the Porte de Versailles was just ridiculous. They’re building the new tramway system along the boulevards. With a combination of the road works and everyone going to the salons (Salon de l’Education at the same time and place as the Salon de Vin???) it was beyond ridiculous. At the end it took us 45 minutes to go the last 600 metres (from Ballard to Porte de Versailles)!!! I dropped Desney off at the Salon so she could meet Arlene. Arlene got from her hotel at La Madeleine to the Porte de Versailles in less time than it took us to drive the last 600 metres. I drove around the parking lots for another 45 minutes. Absolutely every parking lot was full. I ended up patrolling the streets and found a place about 15 minutes’ walk away. I was just so glad to park the car and get out!

For those of you who are curious as to what the Salon des Vignerons Indépendants is I actually wrote an ARTICLE about it for an Israeli food and wine magazine once upon a time. This was Arlene’s first experience and I’m sure it was quite amazing. For me personally it was probably the must frustrating experience of my life. We went round only to the wines we absolutely need right now. With my faint and scratchy voice, burned neck and big scar it was obvious that something had happened. However it was a shock for both sides of the counters to hear me say that I couldn’t drink the wine. I could only smell from Desney’s glass. It’s like throwing a kid in a candy store and sewing his mouth shut. We got out of there in record time as we really only bought the minimum and visited the minimum of winemakers. I had a very good idea as to what we needed already and we had most of it delivered. It was just a matter of filling out the order forms and paying. I spent quite a lot… as usual.

We got home just in time for me to have a very quick rest before heading back out to the clinic for my last treatment of the week. Arlene came with me for her last chance to wait in the waiting room full of cancer victims. Don’t ask me why. The treatment went as always and we headed home. I was in considerable pain and could not stop coughing. It hopefully didn’t affect my driving too much and we made it home safely.

Our getting around safely today may have been helped by the fact that I replaced my TomTom Go One GPS with the newer TomTom Go 500 GPS. The new model keeps track of traffic and calculates the routes based on the current traffic situation. It also works as a hands-free Bluetooth phone solution which was a lot of fun. For a bit of novelty I can also download even more voices for this model and I downloaded John Cleese’s voice. It was a lot of fun but got old pretty quickly.

I was able to take a nap before dinner and Desney made pasta. After dinner we watched Bend It Like Beckham as Arlene had never seen it before.

Wednesday, November 23, 2005

Day 38 – Good news and not so good news…

The morning was as usual. Painful.

Arlene left at mid day to head off to Paris to see her friend Helga who came over from London. She’ll be having dinner at a nice restaurant and staying at a nice hotel for the night. It’ll be good for her to get out of our depressingly medical household.

I grabbed a quick Greek sandwich (donner kebab) so as to get something quick, hot and filling before my treatment. The treatment was more of the same. This time they must have zapped me 7 times! This time first my right shoulder was clamped to the table, along with my face of course, and then they released the right shoulder and clamped the left shoulder to finish.

Afterwards was the meeting I had been dreading: my weekly consultation with Dr. Kanoui with the final decision as regards chemotherapy. He was very pleased to see me looking much better and was also pleased that instead of losing another kilo this week I actually gained 600 grams. He looked over my file and brought up the chemotherapy right away. He looked at the effects of the last two cycles of chemotherapy and asked me what I wanted to do. I told him I didn’t want to continue the chemotherapy and he said he understood and agreed immediately. He didn’t try to dissuade me nor even discuss the matter. He said it was very positive that we were able to complete two full cycles of chemo and he actually tried to reassure me that this would not put me in any extra danger or risk. He also explained that the goal is not for the chemo to wipe me out to such an extent that the radiation therapy can not do its job either. He asked where Desney was, as she had been present at just about every prior consultation with him, and I explained that she wasn’t here because she didn’t agree with me stopping the chemo. He actually told me to reassure her that everything would be fine and that it was a good and understandable decision. All of this obviously made me feel much better and was damn good news.

As next week is my final week started asking about the post-treatment. He corrected me. They had always said that the treatment would last 7 to 8 weeks. We, optimistically, had always leaned towards the 7 weeks. Unfortunately he said that the treatment will last the full 8 weeks which means that instead of another 5 sessions I have another 9 sessions over 2 weeks rather than just one. This was not so good news…

He renewed my prescriptions for the medicines that needed renewing and told me to keep up whatever I was doing to keep my weight up and make me look happy. Dr. Kanoui is unaware of my childhood acting experience {vbg}.

When I got home my throat really started burning more than usual and water just would not put out the fire. I tried to nap before dinner but just couldn’t. We had dinner, without Arlene for the first time in many days, and I was still in pain after the meal.

I spent the evening in front of the television as usual. But I finished my book.

Tuesday, November 22, 2005

Day 37 - Another day...

Another day like all the others.

Woke up in even more pain than usual, as I stupidly wanted to try not taking my painkiller suppository for one night, and spent the morning getting breakfast and medecine down.

At the end of the morning I looked at my e-mail and found a reply from my general practicioner (Dr. Girard). He, of course, feels I should continue the chemotherapy. He proceeds to propose supposedly additional treatment to relieve the symptoms of nausea and convulsions. However the treatments he proposes are exactly those which I already have and they are not working. I had hoped, ever so slightly, that he would back me up in my decision to not go through with the chemotherapy. But I understand his persistence in keeping with "the protocol". I will write back to him to explain my decision.

Arlene and I went back out to the local restaurant (Le Madrigal) for a good lunch as I didn't know if I'd be able to eat in the evening. We had a great time with good food.

After lunch I had a nap and then we headed off to the clinic for today's treatment. In addition to the mask which is clamped down in 3 points (left, right and top centre) they clamped down my right shoulder in a sort of vice to the table. I assume by the end of next week we'll be up to leather shackles, whips and chains...

We all had dinner together. Desney prepared sausages, mashed potatoes, peas and carrots. During dinner I brought up the e-mail from Dr. Girard which led to a rather emotional discussion. It appears as though the rest of the family does not agree with me refusing chemotherapy and they feel I am "taking the easy way out". All I can say is that no one can possibly know how I feel. However it doesn't make any of this any easier for me.

The radiation therapy is starting to really burn my skin and it's gone from red to brown and wrinkled around my throat. The burn comes from the inside so one can only imagine how much worse that is. I hope my skin holds out long enough...

Monday, November 21, 2005

Day 36 - Back to the clinic

A relatively simple day:

I had a really good breakfast (eggs, toast and yogurt) and was able to get all of my medication down and get through my toileteries by lunch time.

Arlene and I went out to lunch to our local restaurant (Le Madrigal). I had a very filling meal (Salade des gesiers, Lentil beans and ham hocks) as did Arlene. She had the Beaujolais Nouveau, which came out on Thursday, and I had water. That's a definite first in my life!

After lunch we headed off to the clinic for my x-ray treatment. Following all of the remeasurements of last week this was the first time that I had the full treatment since. They used to zap me 3 times (once left, once right and once centre). Now they zap me 5 times (twice left, twice right and once centre). This takes a bit longer to set up and carry out. I was sure I was going to really appreciate the additional after effects.

The evening was a bit tough as my throat was really burning. I was able to eat all of dinner (Desney's carrot soup, salad and leftover duck and turkey). But the burning sensation lasted quite some time.

I ended up staying up late watching television... mostly BBC Prime...

Sunday, November 20, 2005

Day 35 – Thanksgiving Sunday

Every American knows that Thanksgiving is on Thursday. However, of course, Thanksgiving is not celebrated outside of America. On Thursday the kids are therefore in school and Desney is at work. As it turns out this year it’s the opening day of our Salon du Vin des Vignerons Indépendants (Independent Winegrowers Wine Exposition). Arlene therefore decided to do Thanksgiving today.

Desney had already gone wide and far to find a turkey yesterday and Arlene woke up in a cooking fury. By the time I got up, about 08:30, Arlene had already kicked Desney out of the kitchen for the day and was cooking up a storm. She soon realised she’d gotten herself in to quite a nightmare. It’s bad enough cooking in a foreign kitchen where you don’t know where anything is or how it works. She’s cooking in a foreign country. The turkeys ain’t the same, the sausage ain’t the same, the herbs ain’t the same… nothing’s the same! Add to this the complication that all of the spices and products in the house are all labelled in French it’s amazing she didn’t poison us! Arlene spent the entire day in the kitchen cooking. Every now and then she’d ask us where something was or what something was. The only really disturbing point appeared to be the potatoes. They had looking all over, yesterday at the markets, for sweet potatoes and hadn’t found any. Sweet potatoes are of course a vegetable indigenous to America and not the European continent. They ended up getting yams from an African store. But yams ain’t sweet potatoes. The colour was all off…

While Arlene cooked Desney had brought some work home and sat proofreading in the living room. I actually went down and hid in my office for several hours and went through some billing, accounting and tax stuff that had to get done. I actually felt quite productive by the end of the day. However I had forgotten to take either one of my two daily naps and realised what a mistake that was later. I took a quick nap at the end of the afternoon but people started arriving by 18:00.

Jessica had her friend Mercedes over and we had my best friend Robbie (the Croat) over. It’s always good to see Robbie if simply just to remind me that I have friends. There is a very special relationship and communication one has with a friend one’s known for almost 20 years. There are so many things we don’t have to say and so many things we can say without any pre- or after-thoughts. It’s always great to spend time with Robbie. It was also interesting to see the reactions between Robbie and Arlene who had not seen each other since Desney and I got married 17 years ago. It was quite fun to watch them politely complimenting each other with snide smiles on their faces.

Dinner was an elaborate affair starting with Champagne for aperitif with olives, nut and sliced sausages. At table we started with some Scottish smoked salmon, a spinach salad done with lemon and olive oil and what looked and smelled like a wonderful Chablis Premier Cru 2001 (Vaillons). The main meal was of course the turkey, which took a while to carve, the sausage stuffing, along with the yams and the green beans sautéed in garlic. The Beaune Premier Cru 2000 red we served looked and smelled great as well. Dessert was a beautiful rich chocolate cake which Desney had picked up at the bakery in the afternoon. We got down from table full to bursting as is customary for the Thanksgiving meal.

Robbie, Arlene and I sat around talking and playing with the computer/TV setup in the living room until late in the evening.

I was able to eat all day and get some things done. It was a good feeling day. The wine on the other hand, as well as my general lack of taste buds, was depressingly frustrating.

Saturday, November 19, 2005

Day 34 - Saturday off

A relaxful day at home and yes... another good day.

I'm learning how to deal with the constant throat pain and swallowing pain. I seem to be able to overcome this much more so than the chemo pain.

I had a good breakfast of oatmeal and yogurt and got through all my medication and toileteries by the end of the morning. I went out to the local bakery and got Arlene and myself a couple of sandwiches. The taste wasn't as usual but it was a good feeling to get down a full sandwich.

In the afternoon Arlene and the girls went off for the girls' dental appointment and to stroll around Paris. They spent some time at the Smoking Forever (Tuxedos Forever) exhibit at the Fondation Pierre Bergé - Yves Saint-Laurent. I spent the afternoon asleep.

Desney prepared a delicious meal of duck along with broccoli and cauliflower cheese. I was able to eat a full plate as well as an extra helping of veg. Later in the evening she defrosted and heated up some of her apple crumble and served it up with some vanilla ice cream on top. Unfortunately sweet things just don't seem to taste good any more, hopefully temporarily, and I could only eat about half of it.

In the evening Jessica, Arlene and I watched Collateral on DVD.

Friday, November 18, 2005

Day 33 – A Good Friday

I hate to say this out loud, as it were, and I’m even more reluctant to put it in writing… but… I had a good day today.

I awoke after a good night’s sleep, thanks to the painkiller up my …, and I was actually able to make myself eggs and toast for breakfast and eat it all along with a yogurt. That made me feel very good about myself as well as almost full. I took my time getting ready afterwards and lunch time came around quicker than I thought.

Arlene wanted to try one of the Greek sandwiches (donner kebab) I had written about on this blog. We went and got one for each of us. They were very nice at the restaurant, as always, and for the first time they even offered us a cup of Turkish tea while we were waiting for our sandwiches. Arlene had hers with harissa sauce, on the side, and I had mine plain. We took our sandwiches back to the house and sat in front of the television, like 2 Americans would, and watched Ballykissangel on the BBC. I have already seen the entire series at least once if not twice. But I have somehow gottten hooked again recently and it’s on weekdays at 14:00 which tends to be just before I fall asleep again in the afternoon.

After lunch, which was both tasty and filling, I had a good nap. Emma arrived to clean the house while I was asleep and the kids got back from school at about 17:00. As my treatments were scheduled for late this evening (19:50) we had changed our plans around. Arlene took the kids out to our local Japanese restaurant (Miyakosushi) for dinner and I went for my treatment. They were kind enough to get me a sushi menu to go so that when I got home dinner was waiting for me and I didn’t have to worry about it getting cold.

The kids went to bed at a relatively reasonable hour as they both have school Saturday morning. I got hooked on something on television… the UK Children in Need telethon, on BBC Prime, and didn’t get to be until after 1:00 in the morning.

Thursday, November 17, 2005

Day 32 – New measurements

The pain killer definitely helped me sleep a bit. I got up feeling more rested than I have in quite some time. It didn’t do much for the pain itself as it still feels like someone’s been down my throat with a flame thrower. But I feel better.

I was able to eat a lot more this morning (a full bowl of oatmeal and a yogurt) and got down all of my medicine which felt good. It took hours but it was worth it. At lunch time I actually made myself a tuna salad sandwich and ate all of it.

Feeling newly strengthened I drove to the clinic, with Arlene, for today’s treatment. In addition to the normal treatment today is the day when they redo all the measurements on my body and on my mask to limit the radiation treatment from now on to a smaller area. This is to protect my bone marrow, which is located in the left/right extremes of my neck, which should only get less than 5 weeks, or a certain number of microns, of radiation. From now on they’ll be shooting at a smaller area which may mean just a little bit less of radiation per treatment. But I doubt I’ll notice the difference.

After my normal treatment, which lasted the normal 5 minutes or so, they took me to the x-ray measuring room. This is the same room where they did my measurements originally, the day before my first treatment, and the guy carrying out the measurements was also the same. A very nice gentleman who appears to be of Indian or Pakistani origin but probably more French than I am. It was supposed to take about 30 minutes. That doesn’t sound like a big deal to most people. But lying completely motionless for 30 minutes is actually quite a lot of work on the muscles. I clench my trousers in my hands so as to pull my shoulders down towards my toes, my neck is turned to the left, my torso is placed in a particular position and my waist is slightly tilted in the opposite direction. Added to the fun is the mask which is, as always, latched down in 3 points (left, right and above the head) so my head isn’t going anywhere. I started sweating probably about 20 minutes in to the procedure as it really is quite strenuous. In addition I believe my muscle tone has greatly diminished along with my weight. However just when I thought it would be over soon the technician picks up the phone and starts asking questions to a doctor about the planned measurements and projected radiation treatments. I can’t actually see any of this as my eyes are closed under the mask. However I can hear their discussion. Next thing I know there’s someone else in the room with us and they’re talking and measuring things all over my head and neck. Instead of this taking 30 minutes it took 60 minutes. Once they released me I got up and noticed that the doctor was actually Dr. Mammar who is probably my favourite of all of the doctors I’ve met at the Clinique Hartmann. I let him know that I immediately recognised him and thanked him.

I found Arlene in the waiting room, not quite asleep and probably a bit overwhelmed after spending an hour and a half in a room full of cancer victims, and we headed home. When I got home I was feeling tired after all of the clinic activities and I slept for a bit.

Dinner was fish with rice and peas and I was able to eat a full plate’s worth. It was most gratifying.

Arlene had never seen Shark’s Tale before and we had listened to a couple of songs from the soundtrack in the car. We therefore watched Shark’s Tale on DVD before heading off to sleep.

Overall a better day than the day before…

Keep those cards and letters coming!!!

I do not have the time or energy (yet) to thank you all individually for the amazing amount of cards, letters, e-mails, messages, flowers and even gifts I have received and continue to receive. Every single one of them is a boost of strength for me. There is an incredibly large number of people out there rooting for me.

The simple thought that there are people out there sending me their best wishes, prayers and most positive thoughts is quite bolstering. I am not alone.

Every day I get a little something… a message just to let me know “we’re thinking of you… you’ll pull through” or “our thoughts and prayers are with you” or “keep you chin up!”. It’s the fact that the messages still keep coming that feels so great. It’s been a long time and I haven’t been forgotten. This without any communication whatsoever on my part!

I’ll be feeling a bit down and a dear friend will send me a smiling photo of Desney and I in our pre-cancer days (mid-July 2005!) having a great time with great people. It brought a smile to my face and warmth to my heart. The mail arrives and there’s a Garfield book in there to cheer me up for an evening. Someone even sent me a DVD of the 25th anniversary of Saturday Night Live which I have probably watched a half dozen times now and still makes me laugh. I get some absolutely beautiful cards. I have one which is a beautiful watercolour done by hand by the person who sent it which stares at me every day. I have a collection of cards in the living room all displayed and all looking at me to remind me.

I honestly don’t know what to say. I can’t begin to express how important the smallest of little messages are and the fact that they keep coming.

All I can do is request: don’t stop!

Wednesday, November 16, 2005

Day 31 – Dr. Kanoui

Still in a lot of pain and not sleeping well.

Back to the clinic, at the end of the day, for treatment and to see Dr. Kanoui. Desney met me at the clinic so we could talk to him together. He examined my throat, which didn’t take long as I almost threw up all over him, and was not surprised by my condition. My throat is apparently quite “touched” by the treatment. It’s both irritated, burnt and even may have a bit of a fungus or something. He gave me a bunch of new medication for the throat. Unfortunately none of the medicine he prescribed will actually make it feel any better. It will mostly protect it, disinfect it and preserve it. He noticed that I have lost my voice, which didn’t require Holmesian detective abilities, and said it was normal. We talked about pain killers and he was kind enough to prescribe some suppositories, which I hate but which are practically my only choice as I can not swallow pills at the moment, which may at the very least help me sleep. We spoke about my weight and he was quite adamant about the fact that I have to eat and get my weight back up. I can’t continue like this. He brought up the possibility of delaying the treatment for a week so as to allow me to recuperate and build myself back up a bit. We’ll discuss that next week. We then spoke about the chemotherapy and I told him that I wanted to envisage the possibility of not going through with the last series of chemotherapy. He was willing to delay the last series, by a week, but he feels I must go through with it. I disagree. But I did not go on about it as apparently “we” will decide next Wednesday.

In the evening there just happened to be a program on TV (Ca se discute) about cancer. It’s a combination panel discussion, with cancer victims, families, an oncologist, a psychologist, …), and sort of mini-documentaries as they have filmed each guest’s home life (treatment (chemo and x-ray therapy), relationships, home life, …). It was extremely well done and quite informative. I can relate instantly to what most of the cancer “victims” had to say. I realised, a little bit more, that I truly am a cancer victim and will forever be part of a group of a very different type of people with a completely different outlook on life.

The show ended a bit late (01:00). I took my suppository like a good boy and went to bed. It did help me sleep…

Tuesday, November 15, 2005

Day 30 – Back to the Clinic

It’s been very nice having 4 days off and I certainly needed them.

Woke up still with the constant pain swallowing and retching every now and then. I think the family is getting sick of hearing me throughout the day sound like I’m just about to throw up. I know I am!

I drove Arlene to the clinic with me. She waited in the waiting room while I had my treatment, which didn’t take long, and while I saw the doctor. I asked to see a doctor when I arrived so as to hopefully get some sort of medicine for my throat and extremely thick saliva.

The doctor was quite nice and sympathetic. He was not pleased with my rather extreme weight loss and prescribed some protein drinks to help build my weight back up. Talking about my extremely negative reactions to the chemotherapy he agreed that it may very well be preferable that I do not go through with the third series of chemotherapy. It felt very good to finally hear someone else, especially a doctor, say that was a possibility. Unfortunately, however, there is nothing anyone can do about my thick saliva which sets off my vomit reflex in my throat and which goes down like acidic sandpaper.

We went home and I tried to get down dinner. Dinner was delicious (salad, cold meats, cheese, …). But I couldn’t get much of it down.

Monday, November 14, 2005

Day 29 – Monday off

No treatment today (again). Four days without going to the clinic is wonderful. I hope I’ve started to recuperate to be ready for tomorrow. My weight loss is starting to worry me. I lost 5 kilos in September and October and I’ve lost another 4 kilos since I’ve started the treatment (4 kilos in 4 weeks). I obviously needed to lose a bit of weight. Before treatment I was looking good (at 80 kg). But now, at 76 kg, I feel like I’m actually starting to look and feel like a cancer victim. I am very weak and tired all the time.

Although I still have a slight bit of nausea all the time, which should have been gone by now, the main pain has come back to my throat. Each time I swallow it’s like sandpaper inside my throat. I’ll have to wait till tomorrow and ask to see a doctor to see if there’s something else we can do.

Desney made a wonderful shiksa chicken soup for all of us. She had actually spent Sunday evening making it a long with the roast lamb. It was great and I was able to get down a full two bowls.

It’s getting difficult to sleep now as the painful swallowing makes me retch and almost vomit. I’m up and down throughout the night which obviously isn’t making Desney’s sleep any easier either…

[Entered on 15/11/05]

Sunday, November 13, 2005

Day 28 – Sunday Dinner

Finally started feeling a bit better today. Still weak and tired and nauseous. I was able to eat a bit at breakfast and a bit at lunch and Desney made Sunday dinner: roast lamb with a wonderful garlic sauce, potatoes and broccoli. I was able to eat a bit of everything and started feeling better.

[Entered on 15/11/05]

Saturday, November 12, 2005

Day 27 – Arlene is in da house!

I woke up still not feeling great. But it’s a special day. My mother, Arlene, arrived from New York at 10:00. They lost one of her suitcases so she didn’t get out of the airport until about 11:30 and was at our place a little after noon. This gave me time to get through the morning, trying to feel better, and to shower before she arrived.

It was great to see her. But I was not feeling well… it was a long day of trying to talk without throwing up…

Arlene brought lots and lots of presents for everyone. We spent a lot of time opening the gifts, trying to figure out what they were and then playing with them… We all sat around talking most of the day. I wasn’t exactly an active participant. However I was able to eat a bit at the end of the day which made me feel better, at least psychologically.

[Entered on 15/11/05]

Friday, November 11, 2005

Day 26 – TGIF?

Woke up feeling awful again and still the constant nausea. I’m starting to get worried as I haven’t eaten since Wednesday afternoon and it’s now Friday evening. The nausea lasted all day while I tried to relax around the house. I threw up again in the evening before going to sleep.

[Entered on 15/11/05]

Thursday, November 10, 2005

Day 25 – Things could get worse

I got up feeling awful. The nausea just didn’t stop and I actually threw up, repeatedly, before lunch. I tried to get some food down before going to the clinic. Luckily today they just had to remove the pump.

I asked to see the doctor as I was feeling absolutely awful and having great, great difficulty swallowing. Desney and I saw Dr. Kanoui for a while and talked a lot. He was a lot more open during this meeting than in most of the previous consultations. He prescribed a series of medicine for my throat and hoped I would feel better by the weekend when the chemicals should work their way out of my body.

Went home, ate a quick dinner and passed out feeling awful.

[Entered on 15/11/05]

Wednesday, November 09, 2005

Day 24 – Had a Bad Day

I had a bad day…

Woke up with the shivers and went in to the clinic. They started treatment and it didn’t go well. This time I had the shivers before they even started and they just got worse. They treated me with extra anti-nausea medication and some cortisone. They called in Dr. Kanoui to check up on me and because of all of the extra care I didn’t get out of there until late in the evening. Came home absolutely exhausted and passed out on the couch. No dinner…

Music today was brought to me by Kenny Burrell, Claude Bolling / Jean-Pierre Rampal, Roy Hargrove and some Robin Williams comedy.

I didn’t turn on my computer again at all today…

[Entered on 15/11/05]

Tuesday, November 08, 2005

Day 23 – Chemo D2

The day didn’t start well and basically went downhill from there.

Painful nausea and throat right from the morning. I was able to get through breakfast and my shower just in time to get back to the clinic for chemotherapy day 2.

Luckly I had my iPod to keep me thinking of something else during the treatments. Today was The Modern Jazz Quartet and then Joe Pass and then James Carter. I didn’t feel great when I went and I felt even worse when I came home.

Then the shivers started in the evening. Not quite convulsions but non-stop shivers that I just couldn’t control.

I didn’t turn my computer on at all today. It was a long day and a long night…

[Entered on 15/11/05]

Monday, November 07, 2005

Day 22 – Back in Chemo

The day I’ve been dreading for 2 weeks.

No problems in the morning. It took me a good hour to get down breakfast and all of the pre-medication I have to take (anti-nausea, relaxants, corticoids, laxative, potassium, …).

I got to the clinic on time and met with a new doctor. He checked out my blood test results and approved my continuing chemo. I explained to him that I wasn’t able to swallow the large potassium tablets and he prescribed a potassium liquid instead. He asked how the last chemo week had gone and we (Desney was with me) told him. He was apparently not too worried about the constant nausea and pleased there wasn’t too much vomiting. Easy for him…. He’s on the other side!

The x-ray treatments went by quickly and then back to chemo. They were completely booked up and didn’t have any more chairs in the chemo room. I therefore got a private room with a bed and my own toilet. What a luxury! Even with the Emla Patch I had put on injecting the catheter hurt this time. But once the fluid started pumping I just kicked back and listened to my music. Three and a half hours later they removed the last perf bag and replaced it with my pump and I left. Desney came to pick me up and we took a taxi home.

At home I just sat around most of the evening. It felt good to be able to eat so I had soup and pasta to try and fatten myself up as much as possible before the days when I can’t eat arrive.

All in all not too bad a start…

Sunday, November 06, 2005

Day 21 – The calm before the storm

My last day before chemo starts again. It was also a day with no treatment or tests or anyone else doing things to my body without my control.

I spent most of the day trying to work on and finish things I knew I would not be able to do next week. I did a lot of e-mail work and some preparation work for my assistant in London and a lot of accounting and bookkeeping. Desney spent a good portion of the day cooking and making meals for the rest of the week in preparation. She accepts that a good portion of her week will be spent taking care of me and she’s preparing so that the family has good food to eat throughout. The kitchen smelled wonderful all day.

Alexandra had a friend over in the afternoon and Jessica had a friend come over for dinner and sleepover. Dinner was fun with everyone enjoying a nice bottle of Côte de Charmes’ Morgon ’99 which looked and smelled delicious.

Everyone went to bed at their normal times as they all have school and work tomorrow. I stayed up as late as I could as I knew that when I went to sleep and woke up it would be chemo day again.

Tomorrow starts my second week, out of three (hopefully), of chemotherapy. I am now both scared and sad. Scared because I now know much better what it’s going to be like and am aware that, with the cumulated effect of 3 weeks of radiation, it’s going to be worse. Sad because I know I have to go through with it. I have three wonderful reasons to go through all of this and I see them every day and every night at home to remind me that it’s all worth it in the end…

Saturday, November 05, 2005

Day 20 – Passed my test

I had set my alarm and woke up early (7:00), jumped in the shower and then paced around for awhile. I couldn’t eat. At 7:45 I went to the lab for my pre-chemo blood test. It wasn’t as bad as I thought it was going to be. He was pretty gentle. I explained I needed the results today and went home. At home I had a slow breakfast and lied around for most of the morning. At 13:30 I went to pick up my results.

I passed with flying colours. Absolutely every test was at normal levels. My kidneys are fine, my liver’s fine, my white blood cells are fine, my antibodies are fine and I still don’t have AIDS. This is all really good news as it means I shouldn’t have to have any supplementary treatment in addition to the chemo. I’ve seen others in the chemo room who have to get injections every day or worse (blood transfusions). I was very pleased with myself as it shows that my body is fighting off the chemotherapy correctly.

I spent the afternoon doing some accounting and correspondence and things I knew I would not be capable of doing next week. Desney spent most of the day shopping and then the late afternoon in the back garden working on the lawn. Once upon a time I did most of the lawn maintenance. But everything’s out of my hands at the moment…

Desney prepared a Choucroute. It was delicious. I seem to be able to handle salty foods much more so than sweet or spicy. Add a bit of Dijon mustard and this was great. I was able to get down half of an Alsatian beer while I watched the rest of the family finish off a wonderful bottle of André Ehrhart’s Gewurztraminer.

I finished my book: the first in the "In Death" series (Naked in Death) by J.D. Robb. Now I can get started on the second one (Glory in Death).

Friday, November 04, 2005

Day 19

Early day today as my treatment appointment was early. I was able to get through the morning fine and had an early lunch. I actually had another Greek sandwich with chips. But without harissa sauce this time. I was able to eat all of it and actually felt good with a bit of a greasy junk food rush. I drove to the clinic for my treatment and afterwards I got my schedule for the week after next’s treatments. I’ll be starting the following Tuesday which is really good news for me. That means that I’ll have four days, after the end of chemo, with no treatment. Next week I have chemo (and radiation) from Monday through Thursday and then nothing from Friday through Monday and then radiation only from Tuesday through Friday.

I slept most of the afternoon as usual. In the evening Desney had to work late as she has a looming publication deadline. The girls and I ordered pizza (Pizza Hut) and I sent Jessica out to rent an action movie. She came home with The Transporter which unintentionally laughably filled the bill. A lot of fun.

Thursday, November 03, 2005

Day 18 - Uneventful

Not much to say about today as I didn't do much.

Spent the morning getting ready and doing a bit of professional e-mail. Had a quick lunch and went to the clinic for my x-ray treatment.

I tried driving to the clinic today. It was wonderful. It was a great feeling to be in control. I wasn't waiting for the bus wondering if it would be on time. I wasn't wandering around wondering what to do when I invariably turn up early and there's nothing in the neighbourhood. I was in control. It was great to drive and be in my own little world listening to my tunes on the stereo. In and out for my treatment in about 20 minutes and back on the road again for home.

When I got home I went to the chemists and got the rest of my medication. I then fell asleep for most of the afternoon.

I tried the new numbing stuff at dinner time. The phosphalugel went down reasonably well. I only retched twice. The xylocaine however, as it's much thicker, had much more difficulty going down and Desney handed me a bucket and asked I did that in the bathroom just in case. The xylocaine numbed my mouth and the top of my throat but just didn't hit the swallowing mechanism which still hurt. I'm not sure I'll try again and I'm certain I will not be able to use either of these products during chemo week when it is almost certain I would throw it all up.

Starting to count the days to the start of chemo again...

Wednesday, November 02, 2005

Day 17 – Back to the Doctor

Today was a bit tough… the pain swallowing and yawning has become constant and, well, painful.

Jessica went off to do some book shopping as she needed to (finally) get some required books for school that she should have gotten at the beginning of the holidays rather than the end of the holidays. Alexandra went off to La Défense to meet with Desney and do some lunchtime shopping.

I was therefore home alone. I was able to eat a light lunch (soup and rice) and headed off to the clinic for today’s treatment. The treatment was easy as always and they were running a half hour late. I asked to see a doctor and eventually was ushered in to see Dr. Kanoui. He was actually much kinder this time and apparently had more time. He examined my throat and prescribed a whole bunch of medication which should help me eat (local anaesthesia for my throat, corticoids, potassium supplements, …). As soon as I got off the bus home I went to the chemists to get my medication. They had everything in stock except for the most important (xylocaine – the internal anaesthesia gel) so I have to wait until tomorrow morning for that.

I went home and to sleep for a couple of hours on the couch. I had difficulty eating dinner but I did get down some solids. I spent the rest of the night wincing every time I swallowed.

If you were to ever think about it and count how many times you swallow in an hour you can then imagine how tiring it would be if every single one of those swallows felt like sandpaper in the middle of your throat and someone slicing at you from the inside…

Tuesday, November 01, 2005

Day 16 – All Saint’s Day

Today’s a holiday here in France so the family is still home and I don’t have any treatment.

Awoke a bit late and spent my time getting ready as usual. Desney spent almost the entire day out in the garden refencing a portion of the flower/plant garden in the back. I spent almost the entire day on the couch either relaxing and watching TV or asleep.

The constant swallowing pain in my throat is getting worse and worse. I was able to eat, albeit painfully, all 3 meals. But I am truly hoping the doctor is going to be able to give me some sort of local painkiller tomorrow.