Thursday, August 21, 2008

My own Olympics

It’s time for a new update.
First, a few pictures: some of us, some of nature. More at the end.

The Olympic Games in China are the most amazing I have ever seen. You look at top athletes who practiced hard for many years and it all comes down to one competition that determines if they go home or continue.
It’s moving to watch the roller coaster of triumphs, failures, joy, disappointments and surprises.
While watching the games (in some very late hours) it hit me that I feel all of the above. If you recall from my past updates, I compared my struggle to a marathon. Now with the Olympics it is even clearer to me. Just like these wonderful athletes, I experience the roller coaster of a very long treatment: the ups and downs (good and bad medical results), good and not so good days with side effects and the expectations before every milestone.
However, since I really feel that it is a marathon, and a longer one than I ever expected, I try looking forward and get less excited or discouraged from the ups and downs. Since I already broke the record of how seriously I was ill at the start of my treatment, I hope to break another record and this will be the full recovery in spite of this situation.

A month ago I started a new clinical trial. The other treatment was working OK but not doing the job fast enough. The new experimental medication is really bleeding-edge: phase-1 on a handful of patients. I am the 12th and last patient to join these trials and the one with the highest dosage!
The first 2 weeks were quiet hard to say the least. As you say in Hebrew “Al Hapanim”. Coupled with vomiting and some cold it wasn’t something I experienced so far. The key was to get used to the side effects and go on. I found that eating did magic for me. With Shoshy’s good cooking and dedication, coupled with my desired to eat all the time, my situation gradually improved and I even gained 2 Kg for the first time in years. Eating when you feel like throwing up is counter intuitive (except if you are a mariner!). Yet, I found this to be the best solution. And so, after 2-3 weeks life returned to the ‘normal’ routine.
I am starting to cope with other side effects, the most noticeable one is pain in the tip of my hand fingers. This is a well known result of the long treatment with Velcade.
So far it comes and goes. All I need is two healthy fingers to continue typing…

Before every treatment, which is now twice a week, I go through a series of blood tests, based on which the doctors decide on the specific treatment on that day. There are all sorts of variations in the battle to protect other systems in the body (kidney, liver, etc.) while treating the main problem. However, there are certain go/no-go criteria for the treatment and one of them is minimum level of Sodium. In my last update I told you about how I drink a lot of V8 two days before each treatment. This loads my body with enough Sodium to pass the required threshold (since my Sodium is very low).
Well, I found a more efficient way to deal with the problem. On the morning of the treatment I eat two slices of bread with a few herrings, plus one big can of V8. It works!

Summer has been quiet and not too hot, thanks God. The house is a mess. We started a few renovations 2 months ago and we hope to finish them soon. Without a kitchen we are like gypsies.
I enjoy having the family around and their support. From time to time we take a walk and go see something interesting, like the annual sand castles contest on the beach (see the pictures).


To summarize: so far so good. I feel like a driver shifting gear and I hope that the new treatment will work well. It has to. In a month I'll know more and hope to continue the positive direction.
Yours, always optimistic,
Guy

10 comments:

Reuven Goldshtein said...

Shalom Guy.
Every morning reminds me of you.
Every day I'm thinking about you and how are you going on your Marathon.
Whishing you to get to the final line as a winner with your hands up full of joy as a champion.
I'm wishing for you to get the gold medal.
With the help of God you will get to it.

Yours
Robby

david santos said...

Really beautiful!!!
Congratulations.

SheBunni said...

Came upon your blog while browsing. I want to send you many warm and wonderful wishes for a full recovery and for each day to be so full of happiness and the love you obviously have!
xoxo

Unknown said...

Shalom Guy,
the Olympics are a great metaphor to your situation.
You surely have the spirit of a champion.
With a little help from God you will win it.
I am praying for your health every Saturday.
Wish you to soon write a blog declaring that you are in remission!

Refua Shlema
Shuki

Cheryl B. said...

HI Guy.
You are already a Champion to me! Your optimism and always positive outlook inspire me in ways you will never know. You are in my prayers always.

Kitrifoto said...

Hey
you are a champ - you already got the gold medal and you are going to break M. Phelps's record that's for sure
when I saw the pics it reminded me who was my photography teacher at the early years - beautiful
and with the olympic spirits still in the air I wish to give Shosy a special gold medal a hug and a big kiss - the one and only - love you for your devotion and stuborness
all the best and F*** the rest
Love
Danny

Unknown said...

Hi Guy,

Reading your blog brought so many emotions in me that it is hard to put them in words and I hesitated before writing this little not but I wanted you to know that I am following your "marathon" very closely and am "with you all the way". I am sending you and your family big hugs and kisses.
Joelle

Unknown said...

Hi Guy,
You truely are my hero!
You deal with SO much in such a beautiful way. nothing can stop you. it take a lot to cope with what you are dealing with and still not only to keep a high spirit but in the same time renovate your kitchen and go to see a sand castle event!
you are simply amazing!
Hugs to the family,
from the other side of the border,
love,
roni

Inbal said...

Hi Abush,
nice blog entry! Soon you are going to have more readers than me :)

Love you all the time!
Inbal

Rami said...

Hi Guy,

Just wanted to say I really enjoy following on your blog and that you are inspiring as ever. The calm, collected manner you deal with everything in life is something we should all learn from.

All the best,

Rami Jaschek