This blog update is hard for me to write. I will share some sad news.
Rachel Hodis (Moti’s wife) has died of cancer last week. The Hodis family are our good friends in the Boston area, whom we see often, play bridge every week, celebrate the holiday parties and sometime ski.
When a good friend passes away it is hard.
When the reason is cancer, it is harder for me.
My rewards for writing my blog are all the calls and emails from people, some of which I don’t even know, asking for info, specialist contacts, or sharing how my blog made a difference to someone.
And so when Rachel got sick a few months ago, I felt compelled to help by talking to Rachel at eyes level – my experiences, what worked well and what didn’t, etc.
We didn’t have the same blood cancer so my focus was on the mental side – how to manage look straight and stay above the rough waters.
We were treated in the same room at Dana Farber Cancer Institute (DFCI) in Boston, and when needed we were hospitalized in the same hospital nearby (BWH).
I sometimes met Rachel at DFCI and remember Moti asking me “what are we doing here?” I am asking this question for over 3 years. How come I don’t get 1/3 off for good behavior?
I also visited her at home and at the hospital. I still feel that I didn’t do enough.
For those of you who didn’t know Rachel, she was the “Duracell Bunny” as Shoshi says. She was very active in everything, with lots of energy, charm and no drama.
Therefore, when she got ill, the contrast was huge and saddening. I am still asking how can any illness bring down such a lively and active good person.
Sadly Rachel didn’t make it. When I heard the news it was hard to believe that this time the cancer won. All along I felt invincible, like a stupid teenager! Overall my Multiple-Myeloma is aggressive, I was the most sick person in MM they have ever seen, I went through 4 clinical trials and 3 standard protocols, a failed stem cell transplant and still I was not really worried that my situation was a life threatening one. Until Rachel died, It gave me a sudden jolt that cancer can kill you. This thought is always in the back of the mind of any cancer patient. The question is simple: do you let this thought drive your life? Not in my case. I did, I do and I plan to do whatever I can, live normally, work, travel, enjoy life with the family and ignore as much as possible the “bad thoughts”.
It is a great satisfaction to win against the beast and I do it on a daily basis. As Inbal uses to say “in small victories”. I even make forward plans. At worse, I’ll have to cancel or reschedule. My great and faithful doctor knows the drill: I ask, explain, negotiate and in the end I do whatever she says.
Last Friday I attended the funeral. It was a day after I had a surgery to insert a port in my chest. It will be used for treatments, blood tests, infusions, etc. and eliminate the needles which killed my arms. It was a very cold afternoon (well below freezing with light snow) and no matter how well I dressed, I was badly shivering. It was touching to see how friends reacted. One person took off his coat and gave it to me. Another gave me a scarf to wrap up my face. Shoshi hugs me all the time and two other people stood very close to shield the wind. Being there for paying the last respect was a must for me to do regardless of my condition or the weather.
I shared with Moti a nice story about my recent contact with Rachel.
As a cancer patient myself, I could have related to Rachel in a way that others couldn't.
I had no problem sharing my experiences and vice versa.
I went to see Rachel during a weekend to consult with her about nutrition.
She had some success with microbiotic foods and told me about what she tried and that it worked.
Not that I am a great believer in special foods, but this was the last resort. I like to eat everything and a lot, even if it wasn’t friendly to my stomach.
For months my stomach has not been cooperating with me, to say the list.
All the treatments had their negative impact. You may recall the last update where I described the challenges of driving and always looking for the nearest pit stop…
So, I had nothing to lose.
Rachel gave me some very good advice and pointed out the things I should eat, how much and where to buy them.
I sat in her kitchen and wrote down everything in my Blackberry.
It was a funny discussion because of the combination of foods, their names and origin.
Some of the items I still can't pronounce well. Kukicha tea???
This was nothing of the kinds I expected.
I was suspicious but Rachel encouraged me to give it a try. We laughed about the whole thing. I called it voodoo nutrition.
Rachel was in a good spirit and probably in her best physical shape in weeks. It was the last time I saw her and for sure it’s better to remember her smiling and joking.
And so I went shopping, got all the items on the list and carefully started eating this bizarre combination of foods. Even my family was surprised that I actually did it.
Three days later, when my stomach stated to behave, I was so happy and still in disbelief.
I didn’t laugh any more about the special foods or called it “voodoo foods”.
I called Rachel to let her know that the not-so-voodoo foods worked!
The special foods still work well!!! Every day when my stomach is normal, no pains, no worries when driving, I think of Rachel. Having a normal stomach is one less hustle in the whole ordeal.
It is amazing how even in her very difficult situation she was able to help me so much.
Rachel was an avid reader of Inbal’s blogs from Africa. In memory of Rachel, Inbal decided to donate her long her for charity that provides free wigs for women with cancer.
Now to some other updates. The last two months have been a roller coaster in my treatment. What I took for granted during the last 3 years, slammed into my face in early November. The treatment worked well but took a toll on a few key parameters that prevented from me to continue this treatment. Probably thanks to the Maitake my immune system is holding up very nicely. Over the past 3 years I have seen other patients around me where their treatment was stopped as a result of complications. Now it was my turn. One by one the doctors stopped certain treatments, which did not help. This week I will start a new protocol with a hope that this is it. There is no other choice. Except for a brief hospitalization due to high fever, I feel good.
The head nurse which takes care of me every time I visit DF summed it nicely. When taking my vital signs last week, she asked “what is you pain level?” I said “none”. Her answer was “you wouldn’t tell me even if you had some pain”.
In the past few months I anxiously waited for the end of December – the family reunion. Luckily for everyone, all the many flights and connections were on time, no luggage was lost.
Inbal came from Uganda. Her plane was the first to land in Boston after a snow blizzard closed everything for 24 hours.
A few days later Pierre too. Neta came from Colombia after a year as a volunteer teacher. She had 4 flights in less than 24 hours. Lior and Ryan (her friend) came from NH. Rhonda and Dan (Inbal fiends) came from Canada.
On 31 Dec. in the evening we were a happy bunch, the whole family, plus a few more..
We were 9 (10 with Shadow the cat) for a few days.
Somehow Shoshi pulled off a miracle and made room for everyone.
On New Year’s eve we went to a great New Year party that our friends organized with food, drinks, an entertainment program, games, dancing and more. We stayed until 4 am!
Thank you Hana, Galit and the girls for organizing such a great party. What a way to start 2011!
My girls know the drill. When the 5 of us are all together (a rare event) I go crazy with the camera. Everyone cooperated with the photographer’s demands and this is how I got the many photos of all of us.
We also had two snow storms. The white puff is always magic and we all take pictures as if this is our first winter in New England. As you can see in the photos, we still enjoy it, though the shoveling is hard work. As Inbal mentioned recently: one person shoveling the snow and three others taking pictures! This is really funny.
As we speak I am flying at 39,000 feet to visit a few customers in Arizona. When I can, I do! There is nothing like face to face meetings.
I hope that 2011 will bring me luck and health. At the same time, my spirit hasn’t changed a bit and I am ready for the inevitable roller coaster.
Yours truly
Guy
The photos below: l
Lots of family. This is my treat.
You can see us skiing (yes, I got an OK from my doctor), the snow storms, shoveling snow, making lots of good Colombian coffee with the espresso machine (thanks to Neta who brought us the excellent Juan Valdez coffee from Colombia).
