Not being happy for the good news or sad because of the bad news

It is the time for another update after almost 2 months and mounting pressure from my constituency...

The title this time is the tactics I adopted early in my illness. Managing the ups and down is the mental challenge. You think that there is progress from one cycle to another and then... bammmm - bad results and a big set back, resulting in a halt to all treatments, change of protocol, too many additional tests including the bone marrow drilling. It is very logical to say to yourself “this is a long story, let’s not get exited either way”. The hard part is really the implementation. After all we are humans. The trick is to quickly get over the disappointment, which is inevitable, and move on.

Last time I reported about the new treatment which I recommended for myself.

After 2 months there was a very nice progress. The bad numbers went sharply down (like never before) and everyone as happy. I was finally within a spitting distance from the sought after maintenance phase. Life was good.

I managed to squeeze a trip to Chicago for a meeting with some 20 customers and give them a nice presentation about inkjet technology. I flew back to Boston on early Friday and went straight to my treatment at Dana Farber. This is my schedule every Friday.

Then things started to look shaky. My immune system and other parameters started to falter as a result of the aggressive weekly treatments. I guess no free lunch: killing the bad cells also do harm to some good ones (collateral damage...). Every Friday I was asking myself “will they be able to give me the treatment today?” The last thing I wanted is a situation where the treatment will have to be stopped. I knew what will happen to my cancer without the chemo and all the rest.

In mid November the major setback happened. My immune system was wiped out, literally it went down to zero! I could not believe my eyes, when the nurse gave the lab tests printout. This was a risky condition that required a house arrest for 2.5 weeks, with no treatments, just home injections and medications. So I stayed home and almost went crazy! I worked a lot from home via phone, email, conf calls and missed the office interaction.

Needless to say, I was worried.

However - "What doesn't kill you makes you stronger"

At this low time I started taking the “magic” Maitake pills, which my sister Iris recommended for me. These Japanese mushroom pills are great immune system boosters that even my doctors at DFCI OKed for me to take. Believe me, I will not touch the other voodoo or Baba-Sali stuff.
In parallel I decided to take care of my stomach. I consulted with a good friend in the area, who sadly has cancer too, and with her recommendations my stomach started to behave for the first time in many months.

After a long house arrest I went on Friday for many tests, including another bone drill test. The results were encouraging: the immune system was up and I could restart my treatment, though a bit modified and less aggressive. Lior was at home at that time and she came to pick me up. During all these problematic weeks I couldn’t eat anything fresh: no vegetables, no fruits, everything well cooked. So when we got the good news, Lior and I rushed home and I devoured a huge pile of salad and then some fruits as desert!

Most amazing was that in the month without chemo the bad numbers stayed the same and didn’t skyrocket like in previous times. This was a good shocker.

On Tuesday I had the final Go-NoGo tests, all very good, paving the way to the resumption of treatments on Friday. That was a long month… I got really lucky this time.

Since then I completed another full cycle of treatments and to everyone’s surprise my immune system got better instead of the typical deterioration as a result of the multiple chemotherapies treatment. The only parameter we changed was adding the Maitake pills. Go figure out! The doctors have no explanation and I assume that time will tell.

I have included here a graph of my immune system (2 parameters) and the timing. Notice what happened when I started to take Maitake (late Nov.). Coincidence? I am not sure. The spike in Oct. was when I was boosted up for the trip to Italy.

So I am back in business with a hope that the treatments will continue without any hiccups or interruptions and that the immune system will prevail. The next phase is the unknown: how to move to maintenance once the bad numbers are low. We’ll cross that bridge when we get there.

I got two unexpected side benefits from my treatments: my vision got a lot better and my hair turned from grey to black. Go figure out!

Once I was out of the cage, I took a quick 2-days trip to Nevada for an important meeting. It was a long flight but worthwhile. A big supplier to our industry invited me to their annual sales meeting as a keynote speaker and it was important for me to meet all the team face to face, present, answer questions, etc. However, it was really a “crazy” trip. Thursday: wake up at 4 am, fly at 6 am to Reno via Salt Lake City, then by car to Carson City and straight into the 4 hours meeting. Then to the evening group dinner. Friday: wake up at 4 am, fly at 6 am, landing in Boston by 4:30 pm, straight into Dana Farber for my Friday treatments! After 3 hours go home, shower, rest and at midnight drive back to Boston airport to pick up Shoshi who came back from a wonderful trip to Colombia (visiting and traveling with Neta). My logic is simple: if I can, I do it! I rested all Saturday…

This was the medical update. Remember the title! I am prepared for the roller coaster. It is inevitable.

Some family updates.

Shoshi went back to her passion of silk flower arrangements. Our basement looks like a flower garden (see in one of the photos below). Her business is selling these arrangements in craft shows and hopefully expand to other opportunities.

Back in October when we discussed the trip to Colombia, I already knew that most likely I will not be able to go. But I encouraged Shoshi to go no matter what. When she left, my numbers were still not that great. However on the same Friday that she took off, I was at DFCI and got the results at the start of my cycle. When I saw the nice numbers, I managed to catch her in the connection in Miami and told her the good news. At least she started the trip with a sight of relief that I am doing much better.

Shoshi came back all excited! Neta took good care of her mom, planned a very nice trip, managed everything, guided, and even prepared a small birthday party for her when they were in Bogota on Shoshi’s birthday. Thank you Neta!!!

Our relatives in Cali, Leon with his family, and their great hospitality also made it very pleasant for Shoshi. While Shoshi and Neta were in Medellin, there were many mud slides with casualties that got me worried.

All in all, I would like to travel to Colombia too on the first opportunity!

I have put some of the Colombia photos in Picasa:

http://picasaweb.google.com/guy.alon/ShoshiNetaTripInColombiaDec2010?feat=email#

The photos with the lakes, the rocky peak and colorful houses is from Guatape. We decided that this is where we should have our next family reunion - it is a little paradise.

Once Shoshi was back, I resumed eating gourmet foods at home!
The next few weeks will be very exciting for our family. It is rather rare to have all 5 of us under one roof (6 with Pierre!). It will happen very soon. Inbal and Pierre will arrive from Uganda, Neta from Colombia and Lior for New Hampshire – all for the new year! For less than two weeks it will be crowded here but very happy for all of us. The girls already know and prepared: I will take tons of photos!!!

And so, there is no better way to start the new year with my entire family by my side!
Let’s hope for a healthy 2011, with only good surprises, a cure for the sick ones, peace, no economic down turns, many happy moments to all of you and also luck!

Yours optimistic,
Guy

It was -16C one night in Needham....

The Blue Tree is a tradition in Needham every end of the year holidays.

Urgently Looking for MacDonald’s, Dunkin Donuts, etc.

(There is no chance you can guess the title above!)

I finally found the time to update my blog.

It has been almost 3 months since the last update.
When I receive emails asking “what about an update?”, I know for sure that it is overdue.

The medical front is challenging. Next week I will “celebrate” the 3^rd anniversary of my illness and I am still in treatments.

When you have a short term challenge, it is relatively easy to overcome any obstacles. When the duration of the challenge is open-ended, it is a different ball game. Lucky for me I know how to mentally deal with the ups and downs over time.

I recall my dad’s stories about long conflicts that he participated in: WWII and the 1948 War for Independence. Some of the difficulties were a result of the uncertainty, no beginning or end and long duration. I can understand.

During July and August I had a few major setbacks and my numbers started crawling upward. By the end of August the setback was huge. I was again at the end of the scale.

Due to this condition, it was clear that we need to switch gear in the treatments. The doctors proposed another protocol and I was prepared for that.

From day-1 I collected all my test results in an Excel file. It was simple and took minutes to type in the 50 or so parameters from my weekly tests.

Since the numbers reached a very bad level, I decided to be a medical detective and dive into all the test results history. Excel is a wonderful thing. With some simple commands you automatically create charts, compare results and find correlations. It was Sunday late at night when I played with the Excel file for 4 hours. My goal was to look for some correlations between the different treatments I had gone through, some 6 key parameters and the results of the different treatment cycles. I am not a doctor. This was a simple exercise in Excel manipulation with very limited medical knowledge and looking only at a few key parameters.

At 2:30 am in the morning – Eureka! I found something which stood above all other results. The numbers and graphs were very convincing. I sent my doctor a quick email with the graphs and numbers, politely questioning the planned treatment and even more politely suggesting something else.

My biggest surprise came a few hours later. On my way to work I got a call from the doctor informing me that my suggested plan will be indeed the next protocol!

Little did I know how difficult it was going to be.

And so, a week later in early September I started a new treatment which is composed of 4 different chemos, with another great hope of bringing the numbers down and fast.

I know it sounds unbelievable, but all the treatments in the past 2.5 years were a picnic compared to the new treatment that I recommended for myself!
The new protocol includes weekly visits to Dana Farber (DF) for all sorts of IVs, injections and pills. In addition, I take some 12 pills every day.

One chemo pill that I take on a daily basis costs $400 per one pill! Luckily my insurance covers this medication. When the FedEx brings it home every month, they require that I sign for it. After all, this package is worth almost $10,000 (and sent to me every month!).

Without getting into details, some medications are not very “friendly” to my body and the challenge of living normal life is now greater. One of the most annoying problems is that with so many chemos and medications, my stomach went wild.

I found myself driving to work or home, in lots of pain, barely able to hold it and desperately and urgently looking for the nearest restroom.

Now I can reveal to you the title of this blog update.

To avoid unpleasant accidents, I learned by heart all the MacDonald's’s and Dunking Donuts outlets from Needham to my work, on the route 128 and in every exit! It works like a charm. Any time I really need to “discharge”, I don’t have to wait more than 3 minutes. It makes a huge difference. As a thank you, I always buy a cup of coffee after the storm is over.

Another strange side effect is the constant ringing in my ears for the past year. This is a known side effect of the chemo. It is constant – all the time - 24 hours a day.

During the day it isn’t that bad. But at night when everything is so quiet, it is a challenge to fall asleep. I guess I have some experience in falling asleep in noisy places (like in the engine room in a ship during my navy days).

I recently saw on TV a documentary about the Israeli comedian Sefi Rivlin. He had cancer on his vocal chords and was treated in Boston with numerous surgeries over a year and a half. There was one most striking similarity between Sefi and myself. He decided that his illness will not prevent him from doing things that he loves to do. I feel so much the same. The alternative is doing nothing and it isn’t really an option. Trying to live normal life is a big moral boost and helps in coping with the illness. Many friends tell me “take it easy, be careful, watch yourself”. Sure, if I want to take zero risks, the best thing to do is simply stay at home. Planning is another challenge. Although the treatment are planned for 3 months ahead, and theoretically I know the weeks off, nothing is sure.

It is hard to explain what normal life means to a very sick person, especially when it drags over a few years.

For this reason I work almost as if I am not sick, except for the travel part of it.

My agreement with my doctors is simple: I do whatever activity I want and need to do (limited travel, skiing, etc.), unless otherwise advised not to do it. I am a patient patient who respects my doctors. They have the veto power.

My medical team is dedicated, professional, accommodating, all of which make my ordeal a lot easier.

This brings me to the recent trip to Italy.

Orbotech organized a first class event in Venice for US and European customers.
Frankly, the event would have been great without me. However, for me and for my job, this was so important to be part of the team and meet so many customers that otherwise I will not be able to see. Lucky for me, the event took place during a week which I was off treatments. My protocol is 3 weeks on, one week off.

So, I booked a ticket and was ready to go on Saturday.

On Friday I came for treatment and expected to be quickly out after 2 hours. The test results were shockingly bad! In other words, I was dead man walking! The doctors decided not to do the treatment because it was too risky. Never before was I denied treatment. Now I was really worried.

There as no way I could go and the trip was the least of my problems. I was more worried about the fact that I can’t continue treatment than from not traveling. I have seen others around me at DF with on and off treatments and the picture wasn’t good. It is also a mental challenge to take a time out from treatment knowing that the numbers are getting worse every day.

My medical team knows me well by now. They knew that I would love to go.

Therefore, they took on a mission to try and “fix” me in 3 days, with a hope that I can fly after the weekend.
On that Friday at DF I got all sort of boosters for a few hours and was sent home with injections to take care of the low white cells count.

By they way, 4 little injections at the cost of $1800 each! (fully covered by the insurance).

My numbers were so bad that it looked to me as mission impossible to ‘fix” me in 3 days. As as result I didn’t pack for the trip. We had a quiet weekend, went to see a Pumpkin Festival, did some shopping and took it easy.

On Monday 7 am I showed up again at DF for tests. When the head nurse got the results’ printout I saw a huge smile. “Good to go!” she informed me. Some of the parameters were so good that I couldn’t believe my eyes. I take my hat off to the whole process. I wish it could be sustained.

Monday just started. I went home and started packing. At noon I went to the airport to pick up my mom and Dani who came to visit us. At 5 pm I took a taxi to the airport. It was my third trip to Boston in less than 12 hours.

In my carry-on I had a few magic injections in cold ice pack and a letter to help me pass them through security. I felt very good. What a difference in a matter of 3 days.

My trip was wonderful. The flights were a bit tough. Throughout the flights I had to wear a mask. Breathing through a mask for 8 hours wasn’t easy. However, I am always willing to suffer a little for something good later on.

Overall I felt good during my stay in Venice. The injections and pills did their job.

It took a couple of days for my Italian to recover. In the first few days I could understand very well but speak very little. After a week I could easily do both.

The event in Venice included some fun and cultural activities, as you can see in the pictures. It was an important step in strengthening the relations with our customers, which is so important in business.

On one sunny afternoon, after taking a guided tour of Venice, all 150 of us went for a group dinner in a restaurant. Just as we finished the coffee and desert they announced that the high tide is coming and if we don’t leave soon, the alleys will be flooded. Indeed some of us ventured into the city a day earlier and saw the Piazza San Marco flooded.

This trip gave me big boost. I saw under one roof many colleagues from Israel and Europe, many customers and also visited our company branch in Italy. With limited travel it would have been impossible otherwise.

This trip to Europe was the second one in 3 months. In late July I visited Italy (Gorizia) for work and on the weekend before I attended Edouard & Anna (Pierre's bother) wedding in Switzerland. On the last day in Italy, I took a day trip to Slovenia, just across the border. Such a beautiful country. See some pictures below.

Next Friday I will start another treatment cycle. So far the results are very good and there is progress. The important numbers go down nicely. The challenges are multiple: making sure that this trend continues, getting to the target low number in a good shape, no complications, no treatment stoppage and then moving to maintenance. Not simple at all.

I look forward to the end of the December where our family will be reunited – all 5 of us and Pierre under one roof in Needham! This is really becoming a rare event.

Every morning I look at the world map in my home and point out in my head the distribution of our family over many continents. Quite amazing.

Pierre and Inbal will come from Uganda for a visit. Neta will end her mission in Colombia and will come home for a month, before going on a 5 months program to Israel. Lior will come from college for her Xmas and new year vacation.
Other than that, it is now the peak of the New England foliage. The tree colors are amazing. I carry my camera in the car and often stop to take pictures as if this is my first year to live here.

Two weeks ago I went with friends to the annual WWII re-enactment. It is amazing to see some 120 guys play war very seriously, all for the foundation whose mission is to preserve the WWII history and legacy. The most interesting part was to meet some veterans and hear their stories.

This is all for now. Let’s keep in touch.

Always optimistic,

Guy

Wedding Festivities

This blog was a difficult one to write. For sure it is not for the reasons you might think. In the past two months since my last update, there were so many events that my head is still spinning. Telling all the stories in a 2-page readable update is a huge challenge and difficult! Here is a good try:

The short version:

Inbal & Pierre got married in France and Israel.

Two weddings (same couple…), 2 countries, 2 weeks, we traveled 10,000 miles each. Guests came from all over the world. Everyone was happy.

The long version:

The planning took place on several continents and lasted many months. Pierre’s parents from France and Inbal & Pierre from Uganda planned the festivities in France (in a minute you’ll understand why I used the term ‘festivities’ and not just ‘the wedding”.

Shoshi planned (I assisted a little) everything in Israel, some remotely and some during her visits to Israel. When it was six months before the wedding, we were still relaxed and before we knew it was about time to take off! We prayed that there will be no volcanic ash, no strikes, no delays, no rain – quite a bit to ask. The Excel file with all the family flights was complex: USA, England, Germany, Holland, Uganda, Israel, and Colombia – many airlines, connections, and airport pickups.

I also hoped to be fit for all the flights, activities, foods and travel. On the day of the flight to France I went for a few hours to Dana Farber for my check-up and also got the final OK to fly. One of the nurses laughed and said “I know you, you would have flown anyhow”. Absolutely right! So I went home to rest and after 3 hours took off to Paris with Shoshi and Lior. At the same time, Neta took off from Colombia.

We were lucky: everyone arrived more or less on time, the Icelandic volcano kept silent, no transportation and air traffic strikes, no rain in any of the wedding events and I was very healthy all the time, thanks to the wine and good cheeses. As you can see in one of the photos below, when there was a hill to climb, I got a little push from my family …

Lior and I spent 2 days in Paris, walking a lot, two museums, lots of coffee on the sidewalk and sight seeing. Then we joined the families who were already at the wedding site in Southern France. Paris-Lyon by the TGV train is amazing – 2 hours at 300 Km/h.

The location was the best possible setup: Pierre’s parents summer house at the edge of a small village (La Buisse) overlooking the Alps, next to very tall cliffs and a huge green in the front.

Guests started arriving to nearby 3 hotels and to La Buisse. Pierre’s parents (Leslie & Geoffroy) hospitality, in parallel to running after the last minute arrangements, made it very comfortable and pleasant to my family. It also provided a good opportunity to sit and talk and get to better know each other family.

The wedding festivities took some 3 days, just like it used to do it in medieval times or today in India.

Guests came from all over the world. I’ll need the world atlas in front of me to list all the countries. Inbal & Pierre are truly an international couple with their experiences and the evidence was their friends.

The first event took place in a beautiful chateau no far to the North. All the guests had a tour of this well maintained and furnished chateau, followed cocktail party on the lawn. Tables with large variety of appetizers, deserts, drinks were a perfect fit to life in a chateau! In the middle of the big yard, musicians played classical music as they did 500 years ago. Inbal was in a write crochet dress made by my mother that Shoshi married me 32 years ago! Closing circles.

The setting, scenery, beauty of the place made the atmosphere great. It was also a golden opportunity to know everyone before the wedding party the day after. How many wedding do you go to and recognize most of the people?

And so in the following evening of the wedding party (29 May 2010), the guests knew each other and I think it created a unique atmosphere for all of us.

In late May in France there is light until 10 pm. We stated at 6:30 pm and had almost 4 hours of daylight for the arrival of the guests, the appetizers, the Chupa, the wedding ceremony and the many group pictures for all. The meal, deserts and dancing took place till 4 am.

The wedding took place on the huge lawn under three big white tents with parquet floor. From the high cliffs above the house we could see 5 parasails of jumpers who used the unbelievable thermals and stayed in the air for more than an hour, watching the wedding from high above.

Inbal & Pierre crafted a wonderful and spiritual civil wedding ceremony in English, French and Hebrew, where every paragraph had a meaning. This wasn’t a standard wedding.

The Chupa and the 7 blessings, with reading in different languages by different people, made it all more interesting and very unique. During the ceremony Inbal and Pierre planted a tree, symbolic to a new beginning and hope.

As the two families stood on the podium with the young couple, I said to myself how lucky we all are.

Inbal & Pierre were excited, beautiful, beaming, happy and looked a lot at each other! They are a match for sure. As an anecdote, they both share the SAME birth date and month! That’s destiny.

After the meal Geoffroy and I gave short speeches. I must admit that this was a very moving moment for me.

The dancing lasted till 4 am. We had a large entourage from New Orleans (Leslie’s family) of very nice and warm people, who taught us how to dance Southern style with flapping your feet on the floor (making noise). At the end of the evening everyone danced Southern style. As expected, Pierre’s brothers ambushed Pierre and dragged him to the swimming pool – with them.

What a day!!!

The next morning, in the same place, a brunch was provided to all the gusts. Everyone came casual. Some dipped in the pool, some played tennis and some football (soccer…). Food, deserts and wine was on the tables, to remind everyone that this is still a wedding a party. As Lior said “now we have to detox from wine and cheese”.

The wedding in France was also one of those rare moments where all five of us are together! See the picture.

A day after the festivities were over, I sat outside of the house looking at the empty tents and beautiful scenery and I thought: did this really happen? All of us were HIGH for many days. A year in the planning, hard work by many family member, expenses, logistics and puff! It is done.

As the guests departed from their hotels and La Buisse, we were getting ready for the next event: Inbal & Pierre wedding party in Israel. We had to say goodbye to Neta who had to go back to Colombia. As a teacher she could not take many vacation days. NETA: the Colombian coffee that you gave me is the best I have ever had!

We took the wedding dress on-board in every flight. It was quite a schlep! Sometimes we had to plea not to check it in and sometime simply ignore the Air France staff and push our way into the aircraft with the dress. We took no chances.

In Israel we gave the dress to a dry clean and asked to do a rush job because of the wedding in 4 days. The guy at the dry clean was surprised and said: “you clean the dress AFTER the wedding and not BEFORE. Then I explained that it is the second wedding for the same couple... He has never heard something like that.

The 3 days before the wedding were hectic. The Israeli summer heat didn’t work well for me at all and Shoshi doesn’t like it either. However, everything was ready (sort off).

The party in Israel was also unique in a sense of the mix of languages, reading and text, all planned by Shoshi. It really added a lot to have family members participate in the ceremony. The location, Chagiga Bakfar (in Kfar Hess), was great and the food was excellent. The ceremony was under the Chupa and Pierre broke the glass with crowd cheering.

Almost everyone that we invited came to the party.

It was really a unique opportunity to see all the family in Israel, our friends and relatives whom we can’t see too often. Usually we come for a short visit and there is no chance to see everyone. To everyone who came: Thank You!

We had Pierre’s parents from France, his big brother & his fiancé from Switzerland, Iris & David from England, Sara & David from the US and my mother came from her seminar in Germany as a surprise. She attended the France wedding and wasn’t supposed to come to Israel. What a trooper!

Like in France, a day later the wedding, still high, a feeling of accomplishment. Suddenly all the months of preparations and waiting are behind. My first daughter is married!

Back in Needham, Shoshi and I enjoy our little paradise. The garden is blooming with plants that we planted just before going to France. The weather is good, a rain every few days to water the lawn and plants, wash the cars and cool the air. The exception: this week it is 30C.

I must keep the blog short, so this is for now about the wedding festivities. We have three thousands photos, some of you saw the links. Soon I will put on Picasa a small selection of the best.

As for myself, the medical roller coaster continues. In the past 3 months I had a few incidents of high fever of a few days.

The red color (see my previous blog – the color of the new chemo pills) disappointed me. The latest results showed regression, possibly because of the other complications. The good news is the doctors found the cause of the fever. I am now under heavy dosage of anti-biotics for 3 weeks to take care of the issues, then the treatment will continue. So far so good.

Hopefully we will see the numbers going down again.

Life is very manageable. Most of the time I have no pain or nausea, I eat well and go to work, but get quickly tired from doing the simplest tasks and some annoying side effects.

I have programmed myself to a long marathon and that’s the reason why I manage it well. It is OK to be disappointed at times (like this one), however always look straight forward for better times.

Always optimistic

Guy