My Best New Year Present & last update for 2008

Right after writing the last update in early Nov. 08, I started a new treatment which includes also a regular chemotherapy, on top of three other targeted medications. I continue to drive very early in the morning twice a week to Dana Farber, by now on an auto-pilot. This is a new ball game and much tougher on my body. It took me a few weeks to get used to the new side effects of the regular chemo. As a Navy veteran who almost never vomited at sea or had nausea (only once in my entire service and reserve!), vomiting was a bad surprise to me.
In the beginning it was really bad. One day on the way back from work in heavy traffic on the highway, I felt like I am bout to throw up. I move slowly to the right lane, trying to find a wide enough shoulder lane, such that when I open the door it wouldn’t be clipped by a passing car.
Before my plan materialized I threw up directly in front of me into the wind shield, blocking my vision. Looking to the right window I slowly moved to the shoulder lane, stopped the car, crawled out through the passenger side door and “Fed the Fish” as we say in the Navy (and a lot of it…). Now I have learned to take the right medications in the prescribed timing to minimize the nausea. The good news, I continue to eat well and not lose weight in spite of the nausea.
Yesterday I started the 3rd cycle of this treatment with its periodic tests that determine progress. This is a critical milestone. The anticipation to the results is a little nerve game. Some of you may know what it means. In my case it must start to work as I have already used 3 options.
My goal was to get into the scale. I started with being twice (!) out of scale and I am within the scale after a year.
The first cycle had very good indications but the doctors don’t allow making any conclusions from one cycle.
The good news to report – I am finally in the scale. It looks like the new treatment works. The same big drop I witnessed after the first cycle, repeated itself in the second cycle.
In the past it took months to get the same drop. Now I hope that it will continue although the body reaction is non-linear and I am also prepared for surprises.
These latest results are my best new year present. I’ll start 2009 with a clear indication that this will be the year of recovery.

There are some rather funny moments during the treatments. One of them, which happens every once in a while, is when I have a serious discussion with the doctors or medical staff. Every treatment starts with blood test, in which the results come back within an hour. Based on the results, the particular daily treatment is decided.
And so from day-1 (13 months ago) when I get the 2-pages printout of the results, I quickly put them in an Excel file that automatically generates all sort of graphs and tables. It helps me to see trends and ask questions. Here comes the funny part. Occasionally in the conversations with the doctors they don’t remember all the facts and their system do not give them the graphs I have. Initially, when I saw a hesitation on their behalf, I pulled the charts and tables and provided instantaneous answers to their questions. Some of them were shocked. These days, they simply ask me “can you please pull out your database”. I do so gladly and everyone is happy. In such a complex treatment with many course changes and so many conflicting parameters, it is critical to know what was administered, when and how did the body reacted.
This reminds me of the Excel file and Fortran programs I used to write when Neta was premature in intensive care for 11 months in Israel. On this ordeal I can write a best seller.

As I said to myself many times, life goes on. In spite of the lingering disease, ups and downs, and not so pleasant new treatment, one must always look forward and try to live normally. I must admit here that in the new treatment, practicing what I say was a lot harder than ever before. The real test is when you feel really lousy in all your body. I think I passed this test too. It is really a matter of practice, like many things in life.
In the spirit of ’life goes on’ I try not to miss a beat at work, although moderate travel is something that I miss. My colleagues are just wonderful and so is Orbotech. Had I worked for a heartless company (and there are many), I would be in a much different situation.
A day before Christmas we went skiing in NH. Typically Multiple Myeloma patients have some very flimsy bones and ski would be completely out of question.
Remember me saying that out of every bad situation there could be a good outcome? Luck struck again. When I did my last bone marrow biopsy, I though I have seen it all. Drilling into the bones without knocking you asleep, is the most painful thing I have ever experienced (already done it 4 times). So when my doctor had to try not once but three times (!!!) I was about to pass out. At the end she mentioned something like “your bones are surprisingly very strong and we managed to go through only on the third try”. A few weeks later when I asked about skiing, the answer was “with your bones, yes, sure, but still be careful”. I didn’t ask twice…
On Christmas day we hit the slopes in New Hampshire, as you can see in the pictures. Skiing is about high adrenalin and feeling the high-speed below your skis. I skied the moderate slopes just to be on the safe side, and we had a blast. The entire site was ours: no waiting time for the ski lifts, just a few skiers, mostly Chinese and some Jewish.
Other events from the last update you can see in the pictures:
Thanksgiving Day Football Game between our town Needham and neighboring Wellesley. We won big times! This is the oldest high school football rivalry in America – 119 years!!! Many people from the two towns come to see and cheer. There are marching bands, cheerleaders, dancers and of course the food!
We also celebrated the first snow storm of the season. We got lucky. There was a huge ice storm that struck 25 miles north of us all the way to NH and VT. Some houses did not have electricity for 2 weeks!
I still love the white fluff with the later ice formations on the roof and windows. We have a guy that comes with a truck to clear our driveway (thanks god). Most New Englanders think that I am crazy loving winter. They all hate it.

In between we have a few nice dinners with friends, Thanksgiving dinner, Chanukah and Christmas. My brother in law came back from 4 months in Afghanistan on behalf of NATO and to see him and Iris back in their home in England via Skype was a great relief. Inbal & Pierre flew to Paris for 2 weeks – not a bad time to be in Paris in Christmas. Neta almost completed her degree in Umass Amherst (5 more months to go) and came home for 2 weeks. Lior now goes back to the Needham High School (last year) as a result that the British Consulate did not approve her UK student visa (bastards!). She is cooking us some amazing creations (cookies and Tapas). Shoshi is taking good care of all of us, all the time! We finally celebrated our new kitchen which was a very long project, but turned out beautiful and inexpensive. Shadow, our cat, always feel like the queen of the house. I worked hard to get Danny a Nikon D300 on Ebay, lost 4 bids and won a great deal on the 5th try (5 is my lucky number).You can see it all in the pictures.
It was a very busy festive end of the year.
If you noticed, in between the updates I am also trying to add pictures and stories about living in America. As part of this I included a picture of the latest gas price which now hovers above $1.50 per gallon! (this is almost 1.5 Shekel per liter). Four months ago it was above $4.15 per gallon! For most Americans, gas price is the national mood barometer.

And so, on the last day of 2008 I wish all of you the very best for 2009.
Be healthy, happy and lucky.
It is symbolic that I got my test results a few hours before we usher the New Year, and they are very good!.
Maybe it is a good sign to come, a blessing that in 2009 the trend will continue toward recovery.
A few hours before 2009, I say to all of you: Be positive, look forward, and don’t believe in all the gloom and doom that the ‘experts’ tell us. We have seen how the majority of them have been so wrong.
Cheers!
Yours, always optimistic,
Guy

First Anniversary !

I feel guilty that almost 2 months have gone by without an update. Some of you rightfully asked me to update, and so I do.
Usually anniversaries are for happy events, at least in my mind.
Two weeks ago I "celebrated" the one year anniversary of becoming ill.

This is the perfect time to reflect. I will never forget the day my life has changed with a phone call from my doctor. I was so sure that what he was going to say isn't that bad, that I agreed to have the news over the phone. I must admit, when he told me the really bad news, the little blood left in my veins, vanished.
Even after starting treatments on 3 Nov. 2007, I knew little about Multiple Myeloma. All the sources told me: "you'll spend 6-8 months in treatments, then a stem cell transplant and then into remission". Little I dreamed at that time that after one year in treatments I could be another year or more away from recovery. In the past year I had the usual ups and downs, moved from the standard treatment to a clinical trial. When this one didn't work well, I moved to another clinical trial (a real Guinea pig!).
After a year I can confidently say that the most difficult aspect of coping with the illness is the time line. On one hand I am not worried about the medical treatment itself. I am in the best possible hands. Yet, the thought of another year or so in treatment is tough. It becomes even tougher as a result of experiencing unpleasant side effects as of a month ago. The side effects my doctors expected to see after 6 months, finally show up after a year. Typically I have legs muscle and bone pain that even with medications they don't always work. Most difficult is the inability to sleep. However, it is now manageable. As I was told "it is going to get worse before it gets better" I have prepared myself mentally to more difficulties. It's almost the same as our economy.
On the positive side: I can ignore the side effects most of the time, my immune system is back to normal and so are a few important other parameters. It allows me travel and work without any restrictions, which is great.

When starting treatments I was off the charts, way off, twice off. I broke the record and this one isn't a good record to break. After a year in aggressive chemotherapy (but a non-toxic one), I have finally touched the end f the scale! Now I am considered "severely ill". Up to now I was a ghost.

Part of the tactics of dealing with my condition is managing of the ups and downs. No matter how much I tell myself to hold it tight when bad news arrive, it is tough.

And so today is a tough day. The recent results indicate a regression. What was a spike a month ago, has become a big setback.

In the main aspect of the cancer cells, I am where I was 9 months ago. Naturally and humanly it is a great disappointment. Nine months is a lot of time with many treatments, needless, protocol changes, etc. and it is all back to square one. Yet, there are other parameters of my health that have improved over time.
Today I came with a meeting with the medical team. The new course is: go back to an aggressive standard treatment with lots of "goodies" including some conventional chemo. I am not really looking forward for this part. Funny, it is what I predicted yesterday. I guess after one year I almost think like a doctor. From next week I will start the new treatment with a hope to see better and faster results. As part of completing the clinical trials for now, I did a bone marrow biopsy today. This is the painful procedure where they drill into my heap bone for a sample. Today was extra painful because they had to try 3 times. It is a good sign that my bones are getting stronger which is great. As usual, out of every tough situation there is also a good outcome. As I write this update, I sit on half of my bum because the other half still hurts.
I will have greater challenges than in the first year. Yet I plan to adopt the same tactics: business as usual, try not to drop any ball at work, travel more, do some fun stuff, and enjoy the close family who has been so supportive.

Now, after you got the medical update, I can tell you that the past 2 months have been very intensive and exciting. I'll briefly describe to you the events and the pictures below will add some spice.

Fall in New England is beautiful. I take pictures of the colorful trees and the leaves as if this is my first year in Massachusetts. If you drive behind me in the Fall, you'll see that I am not a good and steady driver: I look too much to the right and left to enjoy the colorful puzzle.

As a result of a week off in my treatments every 2 weeks, I was able to fly to California and visit customers. It was a good feeling to be back in that routine. Although I promised myself not to over-do it, I came back quiet exhausted but satisfied.
On a beautiful weekend in October I went with a few friends to see a re-enactment of World war 2. Little did we know what this was all about. It was organized by the same non-profit organization with the WWII planes (see my last blog update). With a few friends and Neta we arrived to a grassy airstrip in the woods. On one side there were the allies: British and Americans, some 30 GIs and officers in uniform and weapons, a few Jeeps, armored personnel carrier (old style), etc. On the other side, some 200 m away, were the Germans: some 30 soldiers in different uniforms, weapons, tri-motocycles, 88 mm gun, smaller field artillery and more.
Everything was to the last detail as if it was a picture from 1944.

The next 30 minutes were absolutely ear deafening and amazing. German Stork scout plane flew over the allied positions. Then the Germans started the attack, firing with everything: light weapons, Schpandau, artillery, the 88 mm gun. On the other side, the allies counter-attack was in full swing. Out of the forest, came out a Sherman M-4 tank firing non-stop and the GIs. A Schtuka diver bomber made a pass on the field with a few explosions on the ground (in advance off the show, they planted explosives in the grass to simulate the air attack).
After the war was over we went to see the GI and officers in their tents with all the memorabilia and items from that period of time.
What can I say: only in America!

After surviving WWII, I went for a short visit to Israel to join Shoshy and Inbal who were already there. Six days in Israel is too little, but this is the only vacation I got from my treatments. We really had a good time. The weather in October was perfect (we hate it when it's too hot). Avital and Run's wedding was one of the most beautiful and enjoyable wedding I have ever seen. It was great to see all the family in one shot.

Also in this short week we went to a Shlomo Artzi concert which was amazing.

Spending time with the family was like re-charging batteries. I spent a lot of time with the family and didn't run around too much.

Before we could say "Jack Robinson" the week was over!

Back in Needham, I am back into the routine. Dana Farber was kind enough to finally provide me with a free parking pass. After all, parking in Boston is my biggest medical expense !

Once or twice a week I go with Shoshy to the Needham Library for Yoga and stretching. Imagine the picture: Shoshy, Guy and 10 very old ladies in a Yoga session. Shoshy and I lower the average age...

However, usually half way through I need to rest while the old ladies vigorously continue the session.

Another situation we have to deal with is some UK re-entry visa issues for Lior. We have applied for a student visa and await the consulate reply. As soon as Lior's gets it, hopefully soon, she'll be on a plane back to England to continue her last high school year in Totnes and living with Iris.

Inbal and Pierre live downstairs in the newly renovated suite.

Shoshy is taking good care of all of us!

Neta, our hard working and studying girls, drives home from Umass Amherst for weekend every 2-3 weeks. It is a joy for me to have all the bunch under one roof. They all know the still. Every time I see all the sisters together, I take pictures!

A week ago America has elected the first black president. This is a historic moment and it looks like everyone here is optimistic and wants him to succeed. After all his success is ours. The economy is a big cloud above everyone's head. Yet, for some reason I can't explain, I believe that sooner than later the sun will shine again.
Winter is coming fast, the nights get colder (below zero) and I am sure that in my next update there will be some snow.

On a more warm and optimistic note, signing off for this update,

Yours

Guy