Saturday, January 26, 2008

Ehhh, What's Up Doc?



I have made a commitment to update my blog every 3 weeks or so. The update part is easy, however it is always a challenge what will be the main theme (to spice it up) and more important the title. This time I hit the jackpot - What's up doc? by Bugs Bunny!

Bugs Bunny is me - I love carrots (I drink a lot of carrot juice) and I always ask the doctors a lot of questions. I am sure I'll be lucky like Bugs Bunny, who escapes every possible situation. I am as optimistic as him - look at his smile.

Where does the expression "What's up doc?" come from? There really isn't much story behind the phrase "what's up, doc?" besides that it was simply an invented catch phrase to add to the characterization.

The real reason why I picked Bugs Bunny for this update is because I am going to be one very soon!

In the past 2.5 months I have had 3 chemotherapy cycles. While the progression of the disease has stopped, we had limited sucess in getting the number of bad cells down. The doctors were able to have a lot of progress on many other blood parameters. As a result, I feel really good, no more (almost) bone pain, I move freely, go to work here and there, eat well and try to live normal life. Last Friday I drove with a colleague to see a major customer in CT.

After consulting with the doctors, they suggested me to join the clinical trials - hence the Rabbit!

Last Thursday I went through a screening process to determine if I am a candidate for the trials. For the doctors among you, this is not a double-blind. I will be getting the real experimantal medications.

I will start taking the these medications on this coming Monday and will continue to do so in the next 2.5 months. Similar to what I had so far, the experimental drugs are also non-Toxic and I do not expect an side effects. Based on the results, the doctors wil decide on the next step: continue or change protocol one more time.

All that is left for me to do is be patient and hope for the best. The goal is to get the bad cells to a very low number where the stem cell transplant can be persormed.

As I mentioned in my last update, it is wonderful, helpful and pleasant to have all the family with me.

And so, I optimistically look forward for a successful treatment and to my humble contribution to the medical reasearch process for finding a cure.

Yours, always optimistic

Guy

Tuesday, January 8, 2008

Patience is the name of the game

I write this update not because of some exciting news, but because there is a little change and I don't want to keep the silence for too long.In the medical business doctors don't like to rush and change course. I have recently learned this as a result of my slow progress.The medical team told me to be patient and I have no choice. The explanation is simple. In the arsenal against the disease, there are several bullets. Using the advanced and more powerful ones at the beginning may not be a good idea. If they don't work, there isn't much left to do. The approach is to start with the conventional treatment, run a few cycles, then decide on the next step.Lucky for me, both the conventional and the clinical trials use non-toxic chemotherapy which explains my overall good shape and good appetite. The only limitation is the bone pain which has some impact on my mobility. When I can, I drive to work, drive for treatments and try not to be limited with the bone pain. I move slower than all of you know me.So, the next step is to complete the last treatment of cycle-3 coming on this Thursday, then next week run a few more tests and if the predictions are right, change a protoc

ol and move to new medications (clinical trials). I will be on vacation from all medications for 2 weeks and will start the new treatment probably on 28 Jan.Another month means a lot of patience. As long as I can eat well and the pain isn't too bad, I'll be OK. January is a busy month at work and I have plenty in my work to do list to keep me busy.


Shoshy's cooking:







On the family side, it is getting very exciting for me. Slowly but surely my girls are converging on home. In 24 hours all three girls will be at home and this is really a rare event. Having a family of 5 under the same roof is something we should celebrate.The weather is also very cooperative.

In a glass gallery . . . . . . . . . . Last week's snow storm (our back yard) . . Holiday spirit...





December in New England was very cold and snowy. I had to be extra careful. Breaking a bone is not an options. Last week temperatures dipped to -18 c. However, this week it is amazing +17 c to the amazement of all.So, with good weather, all the family with me, a change of course in treatment and overall feeling OK, it is a good start of 2008.


Yours,

Guy

Sunday, December 23, 2007

Last update for 2007

Almost a month has gone by since the last update. I have learned to accept the slow pace of decisions and actions in the medical business. As I wrote before, I am in a marathon which I intend to win. Having said that, it will take time, ups and downs, time to push and time to pull.

One of my important friends - . . . . . . . . . Shoshy's birthday
the BlackBerry

This year we have lots of snow . . . . . . . . .Chanukah at home with friends

Until two weeks ago I had no side effects whatsoever. While this was very good for my feeling and mobility, there was a constant worry "is the treatment really working?". Now I can confidently say that it does work! I can feel every bone in my body. Walking, getting dressed, standing up - become a painful challenge. I never thought that putting on socks will be so tiring and difficult. With the Boston area covered with snow and ice, walking is a delicate act of shifting balance in perfect timing. Falling is not an option! Can't happen! The doctors whom I talked to are satisfied. The painful bones is kind of expected. I'll have to get used to taking everything slowly and easy. For me this is probably the biggest change: let others do things for me, even simple tasks. Lucky for me, my appetite is not adversely affected: I eat very well (Shoshy's cooking!!!), and munch a lot in between meals. This actually helped me to gain weight!

The past two weeks allowed me to experience how handicapped people cope with their limitations and how others treat them.
Out of pure concern for me, friends have offered help in many ways to make it easier for me. I am very thankful for all the help I got so far and since I am in a marathon, for sure I'll need more help down the road.
At the same time doing as much as I can helps my morale and sense of business as usual.
For sure there is a delicate balance between taking a risk and the daily chores.
I am working from home most of the time and go to the office whenever possible.

On the medical front, the latest results are in the right direction. It looks like the treatment is working. The plan is to continue the treatments, maybe with some changes, until a stem cell transplant procedure can be performed. Nobody can put a timeline, but the notion is that it is a matter of a least few months. With Inbal coming back from Uganda, we'll be a family of 5 under one roof, which is a rare event. I look forward for the coming months where I have the entire family behind me on my way to full recovery.To all of you, have a great 2008, a healthy and a peaceful year.

Yours, optimistic as usual,

Guy
P.S.The link below shows a short video clip with a doctor from Mayo Clinic who explains what is Myeloma, treatments, etc.It is short and easy to understand. Click on the picture on the right, then select the type of player you use.

Thursday, December 6, 2007

Medical Update

The main purposes of my blog were sharing and updating. With so many medical questions coming from many friends, I have decided to get serious (for a change) and explain in plain language what's going on with my treatments. This will save me from re-explaining to all. Whoever wants to know more, be my guest and just ask.
As we speak I am in a hospital in Boston and getting a blood transfusion which will take 5 hours. Thanks to free wireless and my old faithful laptop, I can do something productive (like work and write this update) instead of watching the red drops go down into my body.

The treatment for Multiple Myeloma has got a lot better in the last 3 years or so. The standard procedure is some kind of special chemotherapy in cycles. Each cycle spans over 21 days where I get 4 treatments over 12 days, then 10 days off. This is followed by another cycle and repeated. At the moment I am in the middle of cycle-2.
Each treatment consists of Velcade and other medications. The Velcade was developed in Boston and tested by the team in Dana Farber Cancer Institute where I am being treated. It is the only target medication that exists specifically for Myeloma.
It can't get better than that. The Velcade is administered in a hospital via IV while the other medications are taken at home (pills of many colors and shapes in quantity and order that you need an Excel file to manage the schedule...).
The whole process is a closed-loop operation. Meaning, based on each cycle's results, the medical team decides how to continue and the options are:
1. No change
2. Change mix
3. Change medications

The ultimate goal is to get into remission. It is quiet difficult to achieve that without a Stem Cell Transplant. With some of the experimental drugs (currently in phase-3 clinical trials) it has been achieved. However, in most cases, the stem cell transplant is required.
When the amount of the "bad cells" will get low enough thanks to the treatment cycles, stem cell transplant becomes possible.
The process is simple but somewhat risky:
1. Hospitalization for a few weeks in a bubble - complete isolation. I already asked - wireless works!!!
2. Drawing of stem cells from my own blood and putting this blood aside for later usage
3. Using aggressive chemotherapy completely eliminating the existing bone marrow and the immune system
4. Getting back my blood with good stem cells
5. Crossing everyone's fingers...

If all goes well, it is possible to achieve a remission shortly after this process. A typical remission in Myeloma is a few years.
Then, the cycle repeat itself.

So why am I getting the 3rd blood transfusion? Well, my red cell count is so low that the doctors don't really understand how I am live-and-kicking, driving, working, etc. Nevertheless, they don't want to take a chance and decided to give me a boost. So in a few hours when I drive home, I'll do so literally with New Blood!

This is it in simple terms. As you all know me well, I have read and studied the whole subject in great details, but for you my friends what I gave you is just about right.
Take care.
Yours, optimistic as usual,
Guy

Thursday, November 29, 2007

A whirlwind tour to Israel

There is a word in Hebrew that is typical for me, which Shoshy doesn't like: LEHASPIK (to achieve doing or seeing something in a limited time-frame). How else could you see the entire family and many friends in 7 days?
It all started with the doctors objection to my traveling as planned in Dec. for the family reunion.
They gave me a short window in between treatments (while the immune system is somewhat OK) and I grabbed the opportunity with no hesitation.
Monday the 19th was a long day: a few blood transfusions (7:30-13:00), last treatment for this cycle (14:00-16:00), go home (17:00), shower, rest and at 18:00 go straight to Logan for the flight to Israel.
Thanks to our good friends in Bler Travel, we got a business upgrade which was out of this world and very helpful.

We landed in Israel as fresh as if we just made a quick trip to Natick Mall.
The visit itself was very rewarding to me. I felt very good, looked well and as you could guess, I ate a lot. The conversations with everyone were beyond my illness, thanks to the pre-emptive email. It was a good idea to put the news behind before my arrival. Many family members and friends made an effort to come, some from far away (by Israeli standards).
While in Jerusalem with my mom, she taught me a trick how to go upstairs without getting tired. It works. Up to that point I had to rest every 8 stairs, now I can go up 20.
By the way, getting very tired from going up a few stairs is how I found that I have a serious problem.
As Shoshy and I sit in Business Class on the plane to Europe, all kind of thoughts go through my mind. It's called Uncertainty.
I really don't know when will be my next visit to Israel. It really does not depend on me. I am not used to uncertainties and I don't like them at all. Saying 'goodbye' to my dad was hard. He is too old to travel. I know that other family members will probably come to Boston to see me later. Then comes the thought about the next steps in the treatment process, which for sure will be much harder.
Yet, with all the uncertainty and bumps ahead, I am more determined and optimistic in the course I have chosen to fight this battle.I owe this to my self first and to the loved ones around me.
To all the family and friends in Israel, thank you from the bottom of my heart.
Special thanks to my love Shoshy, who never went to Israel on a short notice and never for less than 2 weeks with LEHASPIK in mind. She made this trip a very enjoyable one.
Signing off from 40,000 feet.
Yours,
Guy

Sunday, November 18, 2007

On the move - again...


After 5 treatments my spirit is high and I never stop eating in spite of all the warnings about side effects. This is really a very good feeling, because I know that the hard part is yet to come.
In the past few months I traveled a lot on business - 7 countries, twice around the world.
When I got ill, the doctors told me: "categorically no travel".
Last summer we had planned a wonderful family reunion in Israel at the end of December.
It was clear that for me it will not be possible to travel in December with a problematic immune system.
The only possible window to travel was ... now, in the 10 days interval between cycle 1 and 2 of the treatments while my immune system is sort of OK. In consultation with the doctor I decided to travel to Israel with Shoshy for 9 days, starting on Monday night (19 Nov.). On Monday I am getting a boost for this trip (more blood), then the last chemo session of cycle-1, then go to the airport and fly to Israel. Crazy? Maybe, but possible.

I really feel well and can do it. I hope for many happy returns.

For all of you whom I am going to meet shortly, please remember: as much as I want to, I was instructed to have virtual hugs and virtual handshakes to protect me from any infections (protect me from you!).
So, I am very excited and look forward for a little adventure. After so many flights, where I flew alone, it's great to fly with Shoshy.
When you have something serious like I do and there is a cloud above your head everywhere you go, you look at small things that you otherwise ignore. At the end of every day I have adopted a motto which I say to myself: "it was another very good day!" Luckily, lately it happens every day.
This is for now. I like to take pictures and decided to share a few with you - some nice pictures of my neighborhood in Autumn. The views are simply irresistible.
Ciao, Guy






Wednesday, November 14, 2007

The Long March to Recovery Has Started

This is a very good week.
I had my 2nd chemo treatment and then rushed home to have a very good dinner.
In spite of all the warnings, I feel well and eat everything (and a lot).
Which reminds me that even in the most stormy seas, when the waves covered the bridge, I didn't give up any meal. Interesting enough, the US Navy had an extensive study to correlate sea sickness to any human parameter. Pre-screening of new sailors was important. They found out that people with blood type A+ are the least susceptible to sea sickness in rough seas.
That's me!
I go to work on and off and the rest of the time work from home.
So far so good, taking it one day at a time!