The Calm Before The Storm

I admire the bloggers who write on a daily and weekly basis. It takes a lot of creativity and commitment to do a good job that will capture the audience, inspire them and leave something to think about. So when I have to update you every two months or so, it shouldn’t be a difficult job. In spite of the tons of information that I can share, the challenge is in keeping it short, interesting and inspiring. It isn’t easy at all. Luckily I collect the ideas on my Blackberry and when it is time to write, I have the framework.

When I met Ori in Israel he gave me a brilliant idea: “why don’t you write a book about how to talk to a cancer patient”. I am not yet sure about a book, but I will definitely pick up the towel later on. Based on my own experience I can testify that this is much needed. People have good intentions but most are not doing a good job when it comes to practice. Maybe in the next update I will dedicate some thoughts and examples. Not that I plan to be sick for a long time but maybe I can help some of you change the way you communicate with other cancer patients.

Overall, dealing with a life threatening illness is like Balancing on logs. You have to walk straight with confidence and make sure that you don’t veer too much to the right or left because you’ll fall. This is true both for the physical and mental behaviors. It is very true in difficult times. I have been balancing on a log for the past 3.5 years.

A quote from Conan O'Brien's speech at a university graduation ceremony (thank you Ori).

“If you accept your misfortune and handle it right, your perceived misfortune can become your catalyst for pro foundry invention”. In simple words as George S. Patton phrased it:

"What doesn't kill you makes you stronger". In my case, I feel that my illness created a lot of good things in my life, made me stronger and better. I will need that entire positive attitude and more in the next few months.

In my last update I was in the brig for cycle-3 of the difficult chemo. Indeed it wasn’t easy. In spite of being the 3^rd time, the days went by very slow and the body didn’t really like the constant bombardment of 4 simultaneous chemos for 24 hours a day. My biggest achievement was that in spite of not feeling well, I was able to force myself to eat three meals a day, also thanks to Shoshi’s food which she brought for me on a daily basis.

At that time, we planned Iris visit to the US. I recall telling Iris: “I am getting into the brig for 5 days, then I will be recovering at home for a week, then I will get high fever and need to be hospitalized for about a week. Please come after the fever”. And so it worked just like that. I got the fever, was hospitalized and a few days after I was discharged, Iris came and we had a wonderful week together. I almost got “tea poisoning”. Iris adopted the British tradition of drinking some 10 cups of tea per day (black tea only, not the mild herbal teas etc.).

In the last hospital stay I had a bizarre incident. As I checked into my room, the nurse put on my wrist the name tag. Inside the room I noticed that the room’s phone number ended with 4551. So I said to Shoshi “isn’t this a familiar number?” and Shoshi quickly replied “Yes, this number is similar to Shirley’s, our friend in Israel”. Moments later when the nurse came in to start my IV, she scanned the barcode on my wrist and the machine couldn’t match it to the medication. Then she took a close look at my wrist tag and said “You are not Shirley!” I was given the wrong name tag, a rare mistake. My name tag was one intended for Shirley with approximately the same date of birth of Shirley in Israel. Go figure out!

On the medical front, never a dull moment.

The doctors at DFCI had a big surprise for me, something I could not expect or plan for.

I am a difficult case. The challenge is that the bad numbers didn’t go all the way down to enable a stem cell transplant. Without going down beyond a threshold, there is no point in doing a stem cell transplant. The three harsh treatments in the last 4 months did get the numbers to a low point but not low enough. Continuing these treatments had its own risks without the guarantee to succeed.

So the geniuses at DFCI came with a plan and presented it to me: “because you are a very healthy-sick person we will do two stem cell transplants!”

I did one in 2009 (the one that didn’t succeed) and recall that it was very difficult. Now two transplants???

After digesting the details, I understood that there is no other way and gladly accepted the plan.

Here is the scoop:

In 10 days I will go through stem cell transplant #1, using my stem cells from 2 years ago (now in the freezer). I will check into the Brigham hospital for 3 weeks, will be in isolation in a clean room, and will receive heavy dosage chemo. It will kill the bone marrow, get the bad numbers to zero and the new stem cells help the bone marrow recover.

Then I will be recovering at home for 1-2 months but under strict isolation.

Hopefully after this recovery, I will check in for another 3 weeks for stem cell transplant #2. This time from the donor’s stem cells.

The recovery from this process will take 9-12 months and will be under chemo to control the success of the new immune system as it takes over my body.

If you recall I reported about a US donor who was a perfect match. Well, that didn’t work due to some medical reason. A month later, while I was still in the brig, I got a call from the transplant coordinator: “Good news, we found a perfect match, male, 21 years old,….. in Israel!”.

It was a small surprise, since she told me months ago that my best chance for a match will be Israel because the cocktail of genes. If you recall, 3 months ago there was a stem cell drive in Israel and I sent you all an email about it. The new donor was a direct result of this drive and thank you so much for the people who participated. Such a simple way to save life.

‪In late May I suddenly realized that I will not be able to travel for another year. And so I made a quick decision to seize the opportunity of the small window in time and jump on a plane for a quick visit to Israel. My wonderful doctor who knows me well cooperated fully and agreed, on one condition, that I get platelets infusion in Israel. Without that, boarding a plane back home could be very risky. Thanks to a very good person and a doctor in Israel, he arranged such an infusion in Ichilov Hospital a day before my scheduled departure. I was good to go! On Saturday, two hours after purchasing the airline ticket, a volcano in Iceland erupted and started to mess up air traffic in the Northern Atlantic. I crossed my fingers and prayed.

Two days later on the departure day I had a full plan which worked well. I drove to DFCI in the early morning, got my treatment, then a series of infusions and boosters for the travel (blood, platelets and more), drove home at noon and a few hours later a friend drove me to the airport. I couldn’t have the luxury of resting for a day after the treatment because it meant one less day in Israel.

I put on the mask for the entire two flights and the airport connection in between. On one flight when people saw a bald person with no eye brows and a blue face mask, they simply moved away from me to other empty seats. This was wonderful! They left me a complete row of empty seats all for myself. I had the best flight ever, slept many hours and felt very comfortable. So next time you fly, take a simple face mask and see if it works for you too.

Since I got ill in Oct. 2007, I never told my dad about my illness. The reason was that because of his short memory problem I would have to repeat the bad news many times and that would make him very sad time and again. This time it was clear to me that I was not be able to hide my illness. I was bold with no eye brows. Therefore in advance of this visit, I discussed my options with Shoshi and other family members and came with a plan: to tell him the truth, but downplay it.

On the day that I landed, Alon & Zipi drove me to Jerusalem where I rested for a day with my mother and Dani. It was so good to relax after the hectic days leading to this trip.

The next day I picked up Neta from Nes Ziona and headed for Zahala to meet my dad. Neta was prepared and knew abut my plan to tell my dad for the first time that I have cancer.

As soon as I opened the door, not yet inside the house, my dad saw me and pointed at my head and said “what is this?”. So we sat down and I described my illness in a simple fashion, saying that it is something of the past few months, the treatments and recovery plans for the new few months. The fact that Neta was there was of great help because he looked at her reactions too. He also saw me active with energy and the fact that I drive and travel, all of which showed that I am in good shape. The next day he asked a few more questions and that was it. I am sure that deep inside he is worried like any other parent would be. At the same time I felt a huge relief. I kept this secret for over three years from my dad who I usually talk to about everything.

The next week in Israel was half hectic. Shoshi ordered me to take it easy for a good reason. I wasn’t in good shape like the year before. Running around was not an option. I did manage to see the family, eat a lot of exceptionally good food and have some fun too. S overall it was only half hectic.

Thank you Etan for making my stay so comfortable by letting me stay in your home near Zahala.

Visiting Neta in Israel was fun and rewarding. In Israel she really swims like a fish and so independent. We had good times, talked a lot and even had a great dinner and a small restaurant in Nes Ziona.

A day after landing I attended Aviel’s Bar Mitzva, which was a great opportunity to see many friends.

I had to meet Ofir, a wonderful lady whom I never met before and took to heart the stem cell donation campaign back in Feb. 2011. She poured her heart and resources ensuring that everyone she knows will go to do the test. I felt obligated to personally come and say a big thank you. There was one little problem: getting to the middle of Tel Aviv with my car. This city is clogged all the time.

Ofer my friend (he was the one who made Ofir ware of my situation), offered to take me to Tel Aviv on his Vespa. After parking my car and meeting Ofer, we put on the helmets and started our adventure in the Tel Aviv traffic. For all the non-Israelis: scooters and motorcycles in Israel don’t obey traffic rules: they zig-zag between cars and always line up first at the traffic lights.

My doctors would have flipped out if they saw this picture: me on the Vespa, zig-zagging in traffic, breathing the exhaust pipes of busses and cars, laughing all the way and having fun.

Meeting with Ofir was wonderful. It was like connecting the dots between what I felt she is to what truly she is: a person with a big heart, common sense, honest and very hard working.

After the meeting Ofer made my day. He took me sight seeing to some very nice places, some of which were new to me. We had a great late lunch and I really felt like a tourist.

The only real problem for me was the hot weather. In my condition it was a negative factor I did not anticipate.

Most of the time I was in and out of Zahala, visiting my dad, talking to him, showing photos, playing Damka and just being together.

On the last day I went to Ichilov Hospital in Tel Aviv for the transfusion. It all went well although it was way too long. What takes 2 hours or so in DFCI, took over 7 hours in Ichilov. The doctors were very knowledgeable and nice, it is just that the system is a bit inefficient and slow. If I had to do my treatments there, twice a week, I would have been very frustrated.

In the afternoon and evening before the flight, more family came to say goodbye.

Saying goodbye to my dad was very difficult. This time he knew about my illness. Secondly, with his old age you never know. The next time I would be able to come is some 9 months if all goes well. It is a long time.

Without much rest, a 2 am in the morning the taxi came to pick me up to the airport.

While in Israel I looked into upgrading my return flights to business. I knew that the trip back would be more difficult. Then, I got a wonderful present – a very good friend of ours has upgraded me, just like that! It was a surprise and a blessing. Going back like a king was something I rarely experienced. Instead of waiting more than an hour for security in Ben Gurion Airport, it took me 2 minutes to pass through. Waiting in the lounge with food, drinks and rest was a remarkable experience compared to waiting in the gate area. Flying in very comfortable seats that turn into horizontal beds make even long flights so easy, not to mention the food and wine. Although I had treatment the day after landing and wasn’t supposed to drink, I could resist some very good wines…

This gift was just in time, after the very hectic last few days in Israel.

I landed on Friday afternoon and was so glad to meet Shoshi.

By Saturday 7 am I was back at DFCI to continue my conventional twice a week treatments. As you can see I maximized the stay in Israel in between treatments, not losing even half a day.

The family is on the move, as always. Lior flew to Kampala to see Inbal and enjoy Uganda. Then she’ll visit Israel on her way back to the US. Neta will complete her volunteer assignment in Israel and will fly back to Boston in Mid-July. She will start her master degree in Umass Boston in September.

As we speak I am getting ready for stem cell transplant #1 (in 10 days). I realize that these 10 days are unique. I can still go and do whatever I want. In the next 5 months or so with 2 stem cell transplants and all the restrictions, I will be confined to home, no visiting friends (just very few at a time), not going out, etc. It is a strange feeling. This is why I decided to call the title of this blog: the calm before the storm.

I once visited a big US Navy submarine in Haifa. One of the officers told me that they go out to sea and submerge for 3-6 months! He said that the short shore vacations are great because they feel free before going back to the cage for a few months. I can now fully understand that feeling.

However, I really look forward for the bold plan to cure me and will do whatever it takes. This is the end-game (on a positive note) and it must work well this time.

For sure two transplants are harder than one. I am mentally prepared to deal with both.

Now I need a little luck too.

Shoshi will be my moral and culinary support and as always, my best friend.

While in Israel I had a very frank and heart to heart discussion with Ori. He asked me if I am afraid. The simple answer is no. I am worried here and there, but when you look only forward, learn how to cope with the many ups and downs, fear is absent. In addition I am being taken care of in the best place, with the best treatments and doctors and have the support around me. I sometime wonder about myself and how I am able to put aside all the uncertainties, difficulties and disappointments for such a long time. There is one answer: there is no other choice. I know it is easy said than done. But at the end of the day, if you are able to do it, it becomes a way of life which makes it easy for you and the loved ones around you.

In 10 days or so I will start a new adventure which will lead to the cure.

It was more than 3.5 years since I got sick, and it is about time to put this ordeal behind me.

Yours, always optimistic,

Guy