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