When the going get tougher

Uncertainty is a silent enemy. It pops in and out and plays games with your mind.
During chapter-1 of my illness I thought that the game is 50% mental. Now it is 90%.
In the two years of treatments before the stem cell transplant, I had my ups and downs but the direction was very clear toward the finish line. I did not occupy myself with “what if it doesn’t work” scenario, and nor did I educate my self about it. The finish line was the target – period! It made it easy to overcome the obstacles, treatments, inconveniences, and duration of what I call “chapter-1”.
Chapter-2 is a whole new ball-game because it is open-ended. Now facing the failure of the stem cell transplant, I started to read and ask about relapse treatment, protocols, prognosis and the picture is complicated. This time it took me a few days to re-program my mind to cope with the new situation and ensure that I stay with the same positive and optimistic attitude.
I recall my dad’s stories about WWII and the Israeli Independence War in 1948. What always strike me is the fact that these were long wars, with a lot of uncertainties, against odds and yet people carried through to triumph.
So my challenge is smaller by any perspective.
Talking about endurance…
In the last treatment I met an old guy with a Navy cap and an flying jacket. Being curious, I started chatting with him. This chap is a WWII and Korean War veteran who flew B-25 and B-29 in WWII and later first P-80 jets in Korea. He then joined the Navy and retired years later. I need a whole new blog to tell his stories. The main takeaway from my conversation with this guy, you may guess… is endurance and hope.

The treatments as I mentioned last time are now more intensive, more frequent and challenge my stomach. Admittedly I don’t feel as well as I used to during Chapter-1.
Yet I manage to roll my self out of bed at an ungodly hour in the cold morning and drive to Dana Farber. I guess when you don’t have a choice, you do what it takes. Thanks to my friend Danny I have some new CDs that cheer me up on the way: a collection of Aris San and others. Sometimes I arrive to the hospital without recalling how I got there.
In early January I went skiing with Lior. A promise is a promise and on that Saturday morning the temperature was -19 C (1 F)!!! This was a bit too cold to ski. We had to rest every 2 hours, go inside and defrost in front of the fire plkace in the chalet. Nevertheless, it was great skiing.
Later in January I took a break, longer than the one week between cycles) and went to Israel with Shoshi. This was a calculated risk and indeed my numbers are not good. Because Multiple Myeloma is chronic and will be a long story, life goes on and I just can’t ground myself. There will be ups and downs and I’ll have to cope with them.
My treatments include two chemos which run for a full week every day, then twice a week, then a week off, and so on. The plan in general is to run the course till July. Then re-evaluate and hopefully, if the numbers permit, move to maintenance (low dosage chemo on a weekly basis).
To demonstrate to you how much I am already familiar with Dana Farber, I can guess the expected parking level (1-7) based on my arrival time within 15 minutes intervals. If I arrive early I park in the higher levels. I never miss.
My doctors really love me. For them and for good research I am a perfect candidate called a “healthy-sick” person! Other than my cancer, I am very healthy, which is great for any clinical trail. Most people have all sort of issues and you never know what really works well and why. This my humble contribution to the medical science.

Last month there was a devastating earthquake in Haiti. Boston is the home for the 3rd largest Haitian community in the US. Many local Haitians are nurses in the many medical centers in Massachusetts, including at Dana Farber. In the days following the earthquake, during my treatment I could spot many nurses crying. Can you picture this: a nurse administering my chemo while in tears and telling stories of missing family members and friends in Haiti. Really sad.

Our family is becoming more international than ever before: we now have representatives in all 5 continents:
North America - Shoshi, Lior and I
South America – Neta
Africa – Inbal & Pierre
Europe – Iris & David
Asia – Zvi
Australia – Ruthy
Wow !!!!! No wonder our travel agents love us.

Now that you know all about my medical status, I can share with you the events in the last month and a half. After all we need some fun too.
When I sit down to write a bog I want to recall all the little and big events. How do I do that? Simple: I have a file on my Blackberry where I add topics as I go along. When the time comes to write the blog, I simply don’t have to remember.

Once Neta left to Colombia, the house became empty again. The tenants are Shoshi, myself and Shadow our cat. Two weeks later we left our Shadow all alone and went to Israel for a wonderful family visit. Thanks to our friend Moshe, who took good care of our cat, we got a picture of Shadow every time he came to feed her. It was so funny to get this lively updates.
To make sure that I’ll be OK on the long flights, I stuffed myself with all sort of pills and it worked. I flew in my sleepers and had 4 seats all for myself, even better than 1st class.
Israel was wonderful. First it is not often that I am there with Shoshi. This time it was even better: we had Iris there too. Being together and spending time with Zvi was much needed to both sides. My father still doesn’t know anything about my illness. It was a decision I took from the get go due to his sort term memory problem. Please help me to keep this secret.
We were very busy from day-1. When I left Boston it was -15 c. In Israel when the temperature “dipped” to +10 C, everyone were talking about how cold it was… There were hot days too, like in any “Israeli Winter”.
As a tourist you can really enjoy everything without being preoccupied with the problems facing this tough neighborhood.
The food was unbelievable. You don’t have to try hard to find a really good place to eat. The coffee was great, even in the smallest gas stations. It was sunny most of the time and as a result of the heavy rains, the country was covered with carpet of flowers and fresh green.
Alon, my brother in law took all of us to see the flowers in the desert, not far from the Gaza strip. It was surreal: here we walk in red carpets of anemones, taking pictures, and 400 meters from us are the first houses of the dense Gaza strip. It was all very quiet this time.
We went to see Sderot (my first time). It is amazing to me that this little town was under random rocket and mortar fire for 7 years. In Netivot, Alon took us to an unexpectedly amazing restaurant. Go figure out – of all places. For those of you who are not familiar with Sderot and Netivot, they are relatively small and poor towns, somewhat forgotten and in sharp contrast to Tel Aviv and alike to the North.

During our stay in Israel we went to two wonderful shows: Yehuda Poliker and Shalom Chanoch. We had to blend some culture in between the chase to see family and friends.
I took a time out from my vacation and went for a full working day at Orbotech in Yavne. It was really wonderful to see my colleagues, update and get updated. I wish I could do it more often. With all the gadgets and electronic tools, there is nothing like face to face and hands on.

Last time I told about an Israeli lady who contacted me via the blog. She has Multiple Myeloma. I went to cheer her up and share the experiences from my stem cell transplant. I felt obligated to tell her what I knew and minimize the uncertainties. It is always easier to face something that you are better prepared for.
Thanks to our friends Tova and Haim, we participated in Seder Tu-Bishvat (a modern tradition in which on Arbor Day we have a big meal like on Passover Eve, but with fruits, vegetables, cheeses, etc.). We read the special Hagada, sang songs, ate a lot and it was a very unique evening with some 20 friends.

One of the most relaxing moments were during the visit to Vered and Haim. They live in a village on the way to Jerusalem. Haim took us on his ATV to the forest and the nearby hills to see the many flowers – carpets of anemones (Kalaniot) and cyclamens (Rakafot). We could not make a single step forward without stepping on a bunch of flowers.
We then sat in the middle of a wheat field, with the green hills in the background, and drank freshly brewed Turkish coffee that Haim made with his ‘coffee kit”. Life is good!
A lot of good people I Israel do volunteer work we never hear about. It is heart warming to hear such stories: The hair stylist that Shoshi goes to when visiting Israel, closes the shop every week for a full day and volunteers to take care of women in a women’s shelter nearby. Or the ex-Orbotech executive who volunteers with an organization for troubled youth. I am sure there are many more.

On the last evening before leaving Israel we have a tradition: we stay in one place and everyone comes to say good bye. It is always great to see the family and friends that we don’t see that often because of the geography.

And so on Feb. 3rd early morning we took off back to Boston.
Getting back in the routine was good: work, home, treatments. Soon Inbal will come for a quick visit. Before we can say “Jack Robinson” it will be May and the wedding of Inbal & Pierre. We can’t wait.

This is it. Stay healthy, safe and warm.
Yours optimistic,
Guy

On the slopes at -19 C !!!




















Defrosting near the fire place, before taking another run





















Watching AVATAR in 3-D





















Tu-Bishvat goodies







































With Shirly & Eran in Tel Aviv

In the fields of flowers, Gaza in the background

Mishpuche!

Nirvana!

Just as I was about to sign off my blog…

The past few months have seen a steady improvement.
This included:
Regaining all my lost pounds thanks to eating well and Shoshi’s great cuisine
Traveling again on business
Going to work every day and enjoying it
No limitation on any activities: skiing, snow shoveling, etc.
Even my stomach got a lot better

There were some special moments.
The blog has provided more than what I had ever envisioned. First for me, it helped me express the status, ups, downs, fun and sad moments. For others, it was an easy way to stay in touch and provide some perspective on life, encouragement and hope.
The magical moments were the events where I got feedback to my blog about how much it has helped other people that I don’t even know. It was priceless.
Just two examples:
An overseas colleague’s mother got really sick and gave up on treatments. Convincing her to read my blog, changed her stand 180 deg. and she is now fighting for life. Another email came from someone I don’t even know who got the blog from friends. She has the same Multiple Myeloma as I had. I was able to get her in touch with specialists in Boston, compare the local treatment to the one done overseas and share some experiences as I was more advanced in the process. It was heart warming to see how my blog has helped others. So you can never know and you have my blessing to send my blog to anyone that you wish.

I was healthy again, felt great, started to make long term plans and was about to sign off the blog and move on.

Never a dull moment and maybe Murphy wins a lot!
Life is full of surprises and throws at you some tricky curved balls.

In late Nov. 2009 I went for my usual checkup, 2 months after the last one, and prepared myself for the start of the maintenance program. This is a standard procedure 6 months after the stem cell transplant to suppress any relapse and involves low dosage chemo pills. No big deal.
I got bad news: the numbers were not good and the light maintenance had to be changed to a heavy duty one.
Here is where it gets complicated. The numbers are still normal, but on the high side, after being very low 2 months ago. Because of the trend and my history (the disease advanced very rapidly), my doctor didn’t want to take a chance and decided to hit me hard and fast with high caliber ammunition.
And so, just as we were about the say goodbye to 2009, one more disappointment managed to slip in this narrow crack (Aya: this was your phrase!).
Needless to say, the blog is on and you will have to bear with it for some time.

Although I had a few worries about a relapse, like every ex-cancer patient, it was nevertheless a big surprise. This time it took me 3 days to digest the new situation. In one word: a big disappointment!
Pulling myself together I arrived to the same conclusions like last time: we’ll fight it and in a style! It was yet another call for battle stations, deja-vu.
I put on my P-51 Mustang T-shirt , got into my car with the CD playing the famous marches, and ‘flew’ to the hospital to start battle #2: additional tests that lasted a full day, including the painful bone marrow biopsy (drilling into the heap bone, which confirmed the findings) and many more tests.
We had plans: Christmas skiing in Vermont and plans are plans!
My doctor was a bit surprised and with no objection on her behalf, we went skiing, with a promise to show up in Dana Farber on the early morning after the ski day – Saturday 7:30 am! They wanted me to start that quickly.
We traveled to Vermont a day before Christmas, as we do for many years. Skiing on Christmas day is the best.
The slopes were ours as most people stayed at home. This year we went all 4 of us (with Neta and Lior) to a big mountain in Vermont and we had a blast. The weather wasn’t too cold, no wind and the trails were long with magnificent views of the area. Most of the time we skied above the clouds level. Lucky for me the pain in the bone (because of the drilling) was gone just a day before the ski. In any case, I would have skied.
On the way back, we stopped by a shrine which is famous for its unique Christmas lights. They decorate the whole slope of the snowy mountain with colorful lightings and decorations – quiet a scene (see the pictures below). After 3 hours we came home tired, happy and with tight muscles.
Without much rest, I was in Dana Farber in the following Morning (Saturday!) at 7:30 am to start treatments in my 2nd chapter. Rolling out of bed at an ungodly hour on a very cold Saturday (-12 c), was not something I looked for.

The first round of treatments was intense: a full week at Dana Farber, starting on Saturday, for 6 hours every day for 6 consecutive days. Then twice a week for two weeks, a week off, and so on. The science behind it is intriguing: I get a special daily shot (Plexifor) for 6 days that releases the bad Myeloma cells from the bone marrow. Once in the open, another chemo (Valcade) zaps them (hopefully). The Plexifor is $6000 per a tiny shot. Multiply by 6, almost twice a month, plus the other treatments, and the monthly cost is staggering.
The goal is to bring the numbers down and continue with the planned maintenance program. I hope I will not have to go through another stem cell transplant. Never mind the process, but not being able to eat and drink for so long, is not for me!

Today I have completed cycle-1. Soon Shoshi and I will travel to Israel for a short visit (plans are plans!). Then come back and dive to the routine I know so well. My car has Dana Farber on its auto-pilot and as usual, with Orbotech’s great medical insurance, my biggest expense will be the parking in Boston.

On the positive side, this type of heavy maintenance is at the time where my strength is back, my weight is normal, I don’t get tired as I used to be and I am sure I’ll tolerate the treatments. I have been on Velcade for 2 years and it is very manageable.

Now that we put the bad news and the medical update behind us, a few other updates (see more pictures below).
On Thanksgiving day I went to see the traditional high school (American) football match between our town Needham and Wellesley (our neighbor town). This is the oldest football tradition among any schools in the US and we celebrated its 118th year! It was a good game, lots of touch-downs but we lost…
December started with a reminder that the New England winters can be cold and white. A few snow storms dumped lots of the white fluff, sometime with temperatures dipping to -16 C. I was very happy to be able to shovel the snow for hours and enjoy it too. I know that the local New Englanders think that I am crazy. They hate it.
After 5 months in Spain, Neta came back home. She organized her adventure in Spain from start to end, taught English to the family she lived with, traveled in Spain during the weekends, made many friends and managed to sneak also a 2 weeks visit to Israel. No wonder my father and I admire her determination and call her “the diligent ant”. (Neta: I hope you understand that this is a compliment).
Pierre and Inbal are now living and working in Kampala, Uganda. We miss them a lot. Skype connection is bad and it is a cheerful moment when we manage to see them both on a screen for a few moments. Sometimes I take a lunch box to work and on the lid is says “Pierre” – leftover from the time Pierre and Inbal lived at our home. Pierre: I am thinking of you even when I have lunch! Between Paris, Kampala and Boston, the family teams are starting to plan the wedding in May and to nail down the dates, places, guest list, etc. What looked ages ago, is only a few months from now.
Lior came home from college for the winter break. Suddenly the house was full again. Lots of girls, showers, etc. I still can’t believe that she is in college. University is a strange business: the actual study days are fewer than 200, the tuition is very high and yet they are all in some financial difficulties.
On New Year’s eve I was still in Dana Farber at 6 pm. I came home, rested, changed and went with Shoshi to our friends New Year party. It is already a tradition: we dress nicely, have a gourmet dinner at one of our friends’ home, play games, dance, eat again, toast the champagne and stay until late. Thanks to our friends Rima and Shimshon, this year’s party was phenomenal and memorable in every aspect.
Going back to work was very fulfilling. Being involved in many aspects of our business and the personal contact with the teams, is adding to the good feeling (and some good results too). I can’t see how people can work from home as a policy. Something important is missing. Our business in North America is challenging, yet with an excellent team and good products, we shall overcome!
Yesterday we said goodbye to Neta. She flew to Colombia for one year on behalf of World Teach (http://www.worldteach.org/) . She will be in Manizales (coffee growing region in the mountains) as a volunteer elementary teacher. We all wish her luck, satisfaction, happiness, new friendships, safety and health. As parents it is our job to be worried, especially when your kids go so far away. Today, 2 days after arriving to Bogota, Neta celebrated her birthday with her new colleagues. Time flies...
This wasn’t an easy moment for me. We have become an international family and I guess it is in the genes of our family. Our immediate family is now spread between US (MA and NH), Colombia and Uganda. I had plans for Safari with Inbal & Pierre as well as a trip to Colombia. These will have to wait for a while.
My next mission is to figure out how to get everyone to the wedding and for sure this will require an Excel file.

This is for now. Let’s really hope for no more bad surprises.
Always optimistic!
Yours
Guy

Salad, honey and grapefruit !

(the title is very significant to me. See later in the blog why)

I got many emails asking me “what’s up?” Time flies. I realized that two more months flew by since my last update. Things are getting even better and I am happy to tell you all about it.

As usual, medical update first and other stories later.

Typically after a stem cell transplant, the recovery is slow. This is why the doctors prepare you for the worst and hope for the best. In my last update I reported that the IV feeding tubes were pulled out and I started to eat and drink very slowly. The process wasn’t easy. Getting the stomach to function again after 2.5 months of rest, was painful. Going fast forward to present day, I eat like a pig three meals a day and many times in between. Recovering my lost 13 Kg is slow but I am half way through. With Shoshi’s cooking it is an enjoyable task. Yet, I had all sort of restrictions: no fresh vegetables (for possible bacteria), no fresh fruits (with a few exceptions), no grapefruit (interacts with some medications), no honey, no sushi, no eating outside of home, etc. Nevertheless, after 2.5 months I could eat on my own and that was great.

Last week I went to my check-up (two months after the last one). The numbers are very good and I am practically healthy and clean. It was quiet amazing to see the long lab report with 99% normal parameters. In the past, there was hardly anything normal. Every line was either High or Low with many High-High and Low-Low. It was a pretty wild scene. I keep some old reports and when you put the old and new side by side, a picture is worth 1000 words!

By the way, remember the Igg chart? I started at 12,000 – twice outside of the scale. Here is the updated one. I am now below the minimum…

My hair grows nicely and its black. My vision is much improved and I hardly need my glasses while driving. Go figure out... My doctor gave me a nice surprise: she relieved me of almost all the restrictions! Because of my good situation, I can now eat everything, do everything, go everywhere. And so from last week I eat salad (lots of it with olive oil) and soon I’ll be back to my habit of a breakfast with grapefruit and a toast with honey. After 5 months of no salad, the taste of it was divine. As usual, when you have something for granted, you don’t really appreciate it. My stomach is behaving much better, though not yet completely fixed. My energy level is getting better. I go to work every day. Shoshi is still shocked and from time to time she asks me “are you REALLY going to work?”. I go upstairs and don’t use the elevator and from Dec. I will slowly start my business travels. Yet, I have no vaccinations until June 2010 and I have to be away from very crowded places, sick people etc. The current flu epidemic is some concern. I do take all kind of protective medications, wash my hands and I’ll put a mask anywhere its needed (like planes).

What’s next?

From next month I’ll start to take very low dosage chemotherapy pills for maintenance, hopefully with no side effects. This is needed to suppress any possibility of re-occurrence. I read somewhere: once a cancer patient, always a cancer patient. It is always in the back of my mind and now I can understand this statement. The statistics are not really available from the relatively new treatment that I got. All that is remained for now is be happy and not to worry! I already broke the statistics so many times…

So, on this happy note, I can tell you a bit what’s up in our family life.
To make it short, I’ll do it in bullets:

· Inbal & Pierre are settling in Uganda. Thanks for SMS, email and Skype, we keep in touch. I can’t wait to see her when she comes for s visit in Feb. 2010. It was sad to say goodbye to Pierre and Inbal who were part of my life and support team for the past year and a half. Yet I am happy for them and look forward for their wedding in 2010.

· With Inbal and Pierre’s departure, Shoshi and I are empty nesters. Luckily we have Shadow the cat.
· Neta just complete a visit to Israel and is back in Spain until mid-Dec. She likes it a lot in Spain. Then, after two weeks in Boston, Neta will fly to Colombia on behalf of World-Teach to be a teacher for a year. Take a look at http://www.worldteach.org/

· Lior is in college and is 18 years old TODAY! · In 2010 we’ll have a lot of travel to visit all the scattered family…

· In early Oct. my long time childhood friend Avramico, came from Venezuela to be with me for a week. We had lots of fun which you can see in the pictures: naval museum with real battleship, submarine and more, World War II re-enactment, flying in an open cockpit Stearman over the beautiful foliage in Massachusetts (yes I flew again).

· My mom visited us for a few days. We took the time for some nice walks, eat a lot of almonds and talk.

· In late Aug. Shoshi went for a visit to Israel. Thank you Ori for the grand tour in Jerusalem! As soon as she came back in early Sep., Inbal and Pierre departed for Uganda, handing me over to Shoshi!

· In Sep. we had the annual MMRF walk, sponsored by Orbotech and raising money for Multiple Myeloma research. This time I walked the 5 Km as a healthy person. Thank you all for your contributions.

This is it.

The rest you can see in the pictures. Returning to normal healthy life is easy. I look back and have many reflections on the last two years. There were many scary and happy moments. This could be a topic for another update. Many of you have asked me if this will the last chapter in my blog, now that I am healthy.

I hope that I will not have to report on any medical news and continue to use this tool for family updates. Since my updates will not be as frequent as in the past, you are welcome to contact me any time. I will continue to forward to you Inbal’s blog from Uganda http://inbala.blogspot.com/ and soon Neta’s blog from Colombia. For now you can see her blog from Spain http://netaalon.blogspot.com/
All the best, be happy, optimistic and healthy!

Yours

Guy