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

Closing a full circle

A lot has changed since the last update 3 weeks ago.

First, I am getting a lot better. As I described last time, I started to eat, slowly and small quantities. In parallel I continued with nutrition and liquids via IV every day. It was a hassle: 14 hours per day with waking up every few hours at night, going out with the bag and pump, not being able to take a normal shower (I had to cover my arm), thinking twice before rolling in bed, and many more inconveniences. After gaining some weight I was really happy because it reversed the trend of losing my precious pounds.

Ten days ago I went to my check-up visit and the last two tubes were taken out. I am free! Finally! Now I eat and drink on my own. To all of you, eating and drinking is no big deal. I guess it is only when you are deprived of something as basic as eat and drink, you get to appreciate it a lot more (and enjoy it too). And so, since 10 days ago I try to eat as much as I can, three meals a day and everything in between. I feel a lot better and going more times to work. The left over problems to deal with are mostly stomach pains and this is really minor. The numbers look good and as a result the frequency of check-ups is decreasing.

It looks like after almost two years of treatment, I did it!

I wasn't alone. The team in Dana Farber and my physician Irene did a great job in taking care of me and keeping me out of troubles. It was a roller coaster with ups and down and they were focused all the time. The close family who gave me the unconditional support, moral and physical. My Orbotech colleagues and my friends who called from time to time, invited me or wrote me emails.

On Sep. 26th 2009 we'll have the MMRF walk, like we had it in May 2008 in South Boston. This time I feel like a NASCAR driver doing a victory lap. It has been almost 2 years of treatments and now after the stem cell transplant it looks like I am clean and done.

If you live in the Boston area, please go to the link below, register, donate and come to walk with me on the 26th. If you live far away, you can go to the link to donate. It goes for a good cause. Since Dana Farber is the best research center for Multiple Myeloma, they get most of the contributions. It is a nice way to say thank you to the organization and people who successfully took care of me.

http://321cure.themmrf.org/goto/orbotech

On this coming Tuesday Inbal will take off to Uganda for an extended period work there. This will close a circle of almost two years. When I got sick in Oct. 2007, she decided to come home from Uganda right away. I am grateful and moved by her long time-out . Having Inbal and Pierre with us was so nice and important to me. Typically kids go away after high school. Extending their stay at home, especially at a time of need, is a true benefit and a blessing. Now that I am healthy, Inbal is going back to Uganda to continue her mission. Get ready for her wonderful blogs!

Summer is almost over. Very soon Shoshi and I will become empty nested: Lior went to college last week, Neta is in Spain and Inbal and Pierre move to Uganda. We now have a big house and too many cars...

However, no regret. It is perfect timing: once I got better, everyone can continue with their plans.

I look forward to getting stronger, getting back my lost 20 pounds and having less restrictions (like not eating certain foods and no air travel).

This blog has been a great tool for you and me, as I predicted on my first posting. I haven't decided what's next and we'll take it one day at a time.

So, until the next time - Ciao!

Yours always optimistic,

Guy

Patience

The name of the game is patience.
Since my last blog (5 weeks ago) there are some improvements. Two weeks ago I started to eat and drink - slowly and small quantities. The slow weight loss trend was reversed and I am slowly getting back my lost pounds. Everyone around me volunteered to give me some... they wish and I wish!
I am taking a medication that my doctor prescribed to me which is not FDA approved. It is made and shipped from Canada and there is an ongoing controversy and politics about it within the FDA. Most doctors believe that it is crazy not to approve it and it is used legally in Canada and Europe. These little pills suppose to rebuild the stomach ability to digest. However, I need more patience as this is not a quick fix. My doctor told me "3-4 weeks".
And so, I continue to get the nutrition and liquids through the IV and in parallel eat as much as I can and whatever was recommended for my condition.
Overall I feel a lot better, a day and night difference than 3 weeks ago. I don't have any nausea or vomiting, I am active and look better. My numbers show that my illness is gone, although it is too early to conclude, but it looks really very good. The restrictions are common sense: I don't go where there is a large crowd, I put a mask if someone nearby is sneezing, washing hands very often and this is it. Shoshi and I take short day trips and whenever needed I take the IV bag with me (as you can see in one of the pictures).
Hopefully in a month or so I get off the time consuming and inconvenience of 14 hours a day of nutrition and liquids IV.
So far for the medical update.
Summer is here and this week is hot 30-33 C. Overall the weather is good and the beauty is that every 3 days or so the rain waters the lawn and flowers, clean the cars and driveway and makes everything fresh.
Last week Zipi and Alon (Shoshi's sister and her husband) came to visit us for a week after touring Canada. It was a good time to catch up, see Boston and visit some interesting bicycle shops with Alon.
Until a few weeks, everyone was at home. We had a full house plus Pierre. Soon this will change a lot. Shoshi will travel to Israel for 2 weeks, Neta is in Spain for 3 months, Lior leaves for college and Inbal & Pierre fly to Uganda. Shoshi and I will be empty nested! Below are a few pictures from the past 2 months.
Yours optimistic and patient,
Guy

One more hurdle

Dear all
I am back at home, sweet home. Needless to say, it is muuuuuuch better than any hospital. The family support was much needed. They came to be with me every day and it was so good.
Shortly after being admitted, the chemo messed up my digestive system so bad that I could not eat or drink on my own.
As a result I got everything through the veins. The last week in the hospital was difficult. I felt the need to get out. Three weeks was more than enough. I started to negotiate with the doctors the conditions to go home. Usually they don't like to discharge patients in my condition who will have to rely on home care with IVs for food and fluids.
Finally they agreed and this is how I managed to get home.
As we speak I still can't eat or drink (although I very much want to). This is an unpleasant hurdle on the way to recovery.
Every day I get a 2L bag of nutrition through my vein and a bag of liquid too. The process is easy and I can do it myself or with the great help of Shoshy and Inbal. The challenge is to manage the occasional pain and nausea.
Now the question is how long? I need the time to let the digestive system to recover. I don't have a clue as to how long.
On the positive side, my numbers look great. As a result, all the severe restrictions are somewhat relaxed and I am more free to go out, see our friends, etc. The weather here is beautiful, sunny and not too hot. I take 1-2 walks a day and in general try to spend time outside in our beautiful garden.
July is a month of transition. Soon, Lior will come back from Israel, Pierre and Inbal will leave for France for a month and Neta for Spain for three months. In September everything will change again: Lior will go to college and Pierre and Inbal will move to Uganda.
This is the quick update for now. Pictures next time.
Let's hope that by the next update I'll be able to drink and eat on my own!
Yours always optimistic,
Guy

Getting my independence

Tomorrow is July 4th – US Independence Day.
Today, July 3rd, I am getting my independence!
After 24 days in the cocoon, I will be released. I can’t wait to go home.
It has been a lot tougher than I anticipated. Managing the mental side was relatively easy: small room, nothing exciting, etc.
The complications came from an unexpected angle: food and drink. Shortly after getting in and the two rounds of chemo, my appetite went bust. As a result, since June 13th I wasn’t able to drink or eat on my own. I still can’t drink or eat as we speak!
The alternative is getting everything through the veins. In addition I didn’t feel well most of the time, with occasional vomiting, etc. Not a pretty picture.
On the positive side I was very lucky to have my family support. Everyone came to see me: Shoshy, Inbal, Pierre, Neta and Lior. At least I had good company and support at times when the spirit was low or during other periods where help was needed.
After negotiating with the doctors we came with a plan: go home and continue to get the liquid and food infusions at home! The logic was simple: I am certain that at home I’ll feel a lot better and will start to drink and eat on my own.
So, in a few hours I’ll go home with a great hope that all this infusion business will be a matter of a few days only.
Going forward, I will have to come back for periodic check-ups. At home I’ll have to maintain some isolation guidelines which are part of the recovery process. My numbers look good and we hope for the best.
So this is it, one more chapter is winding down and a new one will start soon.
Yours, very optimistic,
Guy

Almost Done...

Dear all
Today is D+13, 13 days from the stem cell transplant. I got very much used to living in the small room. As expected, after the strong chemo, I lost my appetite and all the important parameters went to the floor (like the imuune system). For a week, the numbers were so low that you wonder how lucky you are to get out of this situation. That week with very low numbers was the the most risky period in this adventure.
As in the textbook, 3 days ago the numbers started to go up and in a fast pace. So far the medical team is very happy with the progress and status. On the flip side, I can't eat and drink on my own and this will have to be resolved before going home.
I am already 2 weeks in the room and got used to the routine. My family comes to be with me every day and it is really very encouraging. I really hope that within a week I will be able to go home.
This is for now, just a short update. I hope for even better news in the next update.
Yours
Guy

The point of no return

In every trip, by air, sea or others, there is a point where you can't go back (usually it's fuel).
As I started my last phase of the treatment in an isolation room, I felt like a pilot who crossed the point of no return. However this is for a good reason with a plan to safely land in remission.
After settling down in the isolated room, it looked to me that the next 2 weeks will be easy.
I was totally wring. Right after they started with the 2-day aggressive chemo, everything changed: nausea, weakness, loss of appetite, sour throat, stomach pains and occasional throw-ups.
The past 3 days were the roughest.
The purpose of the treatment is to bring all the systems to a very low point and allow the new stem cells to do their work. A little more than a week ago, I saw my stem cells going back into my system. It was sort of an anti-climax. Going through 20 months of treatments is all for the very important 20 minutes of getting back the good stem cells.
The last 3 days were the bottom of everything.
I felt like barely alive. I haven't had almost any food in 5 days.
Today the numbers start climbing. I still feel crap but better.
It is now D+9 and I hope to go home in D+15 (less than a week from today).
Shoshi, the girls and Pierre come to see me every day and it is important. When I can, I talk to a lot of people over the phone and Skype with a camera.
I hope that from this turning point I can better stay in touch.
Today is a special day: it is Father's Day and also Shoshi's and my 31st wedding anniversary!
I can't even start t0o describe my feeling to Shoshi, it is too personal. If there is one thing that kept us together in good and bad times, is the fact that we are still the best friends.
Now I have go rest. Even writing this short update was a challenged.
All the best to you, happy Father's Day and stay tuned for even better news.
Yours with optimism,
Guy

Reporting from the cocoon!

This is the moment I have been waiting for 20 months - the beginning of the end.
I am now locked in a clean hospital room for three weeks, where my recovery begins with the stem cell transplant.
After such a long treatment you don’t know what to expect. I read the materials, interviewed someone who has done it, talked to the nurses, but the real thing is when you go in. At least mentally, I was calm and ready.
Thanks to the love and support of my family, I checked in last night in a relatively very good shape. This is a good start.
From now it is three weeks and then recovery at home.
As expected, the closer I got to this milestone, everything was more difficult.
Last week I went to the process of stem cell harvesting. First, for five days I gave myself injections to induce their growth. Then for three days, 6-7 hours at a time, I was hooked to a big machine (picture below) where the stem cells were collected. This was a much tougher process than I anticipated.
Anyhow, this is all behind me and I am in the cocoon!
The medical team here calls the stem cell transplant as D-Day! I didn’t know it before, when I wrote the last update. Everything is related to the day I am getting back my clean stem cells via a blood infusion. This will happen on my third day. So today is D-2 and the release date should be D+18, etc.
The good surprise is that the hospital is very accommodating family visits. Everyone has to wear masks and gloves and the key is to protect me from ANY infection while my immune system goes down, before it goes up again.

Knowing that I will be locked in for three weeks, my schedule in the past 10 days has been hectic. I also knew that once I start the process, there will be certain restrictions that will last months. For example, no restaurants for six months, no fresh vegetables and fruits for many months, no Sushi forever, no large crowds, etc.
Therefore, I was on a roll!
Shoshi and I went to eat outside several times, went to see friends, see a magnificent dance show, and more.

Last Sunday we had a graduation party with over 80 friends. There were many reasons to celebrate: Neta’s university graduation, Lior’s high school graduation, Inbal & Pierre graduation from being single and my graduation from 20 months of treatments. Our good friend Hana volunteered to host in her beautiful house and Shoshi with a few girls worked hard on the preparations – food, flowers, and much more. The weather was on our side.
It was a memorable afternoon with good company, sunny beautiful garden, good atmosphere, happy friends and lots of good food.
It was also my opportunity to say a temporary goodbye to our many friends.
On the following Monday afternoon we attended Lior’s high school graduation.
When I saw her marching in her white graduation gown and hat, I realized how fast time flies. It was only yesterday that we came to Needham and she was a toddler.
I am sure that on this occasion she is as happy as I am.
And so as Neta is out of a university, Lior goes into one in Sep. It helps, but it wasn’t planned.
Inbal and Pierre are so lovely. It is a bonus to be around loving people. Their plan is to return to Africa in Sep. and I will miss them a lot.
Last Tuesday (yesterday) was a long day. I suddenly realized that I haven’t even started packing. Eventually I did and in the evening the Alon family and Pierre went to the hospital in Boston.
I don’t think the nurses have seen such a large entourage on a restricted floor. It was great to have all the family with me, helping to settle down physically and mentally: disinfecting my belongings, hanging posters, talking and having a good time – all six of us in a small room!
As I got my first chemo today, a lot of thoughts crossed my mind.
I couldn’t be that strong if I hadn’t such a family. My spirit was free of worries and I could focus on coping with the long treatment. Coupled with very good friends and colleagues, I am really very lucky.
At this final stage, the strength I gained so far will be instrumental in my recovery.
And so, for the next three weeks I go nowhere. I set my office in the room, I have DVDs, music, books and lots of work to do. I plan to be in full communication with the outside world via phone, email and Skype.

Optimistic as usual,
Yours,
Guy