Keep In Touch: December 2010

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/ShoshiNetaTripInCol ombiaDec2010?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