Notes From The O

 

DO Notes #5 26 October 2004

REVELATIONS
This was a stream of consciousness dictated from me to Debra. I have little editorial control.
Just like Dorothy said, there’s no place like home. Coming back from the hospital Friday afternoon was like the magical mystery tour. It was a source of awe and amazement to watch people doing their everyday things in cars and crossing the streets. For me to open the window and have a breath of fresh air. To see traffic lights and just the everyday bustle let alone the seasonal change that has always been my favorite. I’m truly the luckiest man on the face of the earth to be home with my family after 4.5 weeks. It’s impossible to believe that I spent 4.5 weeks in one hospital room.

Richard Stone
During my life, in the many places that I have lived and the many people that I have met, I cannot tell you the unique human quality of Dr. Richard Stone. For all his brilliance and world-renowned knowledge of leukemia, there is no more regular guy than Dr. Stone. Though the focus has always been on getting me into remission, our short conversations discussing baseball, Adam’s Bar Mitzvah, or just the world in general, has made an impression on me that I will never forget. I understand that it’s his job to help cure me, but it’s far beyond his textbook knowledge that makes him such a unique human being.

Mina Gibb
I met Mina through my friend Betsy Cohen 8-10 years ago when she was a massage therapist. Mina is, quite simply, a natural healer of the body, the mind and the spirit. Her gifts are God given and nothing one could possibly learn out of a book. She has become an integral part of the team that is working to bring me back to health. On Saturday, I had one of the most unique spiritual experiences with Mina. For those of you who don’t know, Debra and I built an incredible 4 season sunroom. Its all amber-colored wood and glows with a light that’s almost difficult o explain. It has floor to ceiling windows and looks out on the conservation land in our backyard. Mina set up her massage table in the room and, at first, the light seemed bothersome to me but, as our 1.5 hour session progressed, I was able to open myself up to the spectacular change of colors and light while Mina was doing her thing on my sore body and psyche. During the course of this experience, Mina and I shared a number of revelations; Be gentle on yourself. Be patient with yourself. You can’t heal in just one day. It was time for me to start preparing and strengthening my body for the transplant. Now, this might sound a bit corny to some of you especially coming from me, but this is square business and there is much about me and my perspectives that have been radically changed. More on this later.

My Wife
October 25th was Debra’s birthday. Happy birthday Debra; I could never have made it without you. Her strength and unrelenting bitchiness towards others in the name of protecting me has been incredible (she’s laughing as she types this). We grow closer with every passing day.

All the e-mails; All the Love
How can I be so blessed to have so much love, so much support, and so many e-mails from so many people all over the world? The telephone calls and the clicks on the website (my next commercial venture; soon you’ll be paying per click) have been innumerable and awe-inspiring. And some of the people I have re-connected with, who I haven’t spoken with in what feels like decades, have helped my healing process more than they could ever know. So keep those cards and letters coming, folks; I never, ever get tired of ‘em, I’m just sometimes too tired fighting the battle to respond.

The Boyz
I am so proud of Adam and Jake. Despite all the attention that Debra has had to give me, and all the fears and questions they have about my health, they seem to move forward with confidence and conviction. Adam is obviously studying for his Bar Mitzvah on 11.20.04. But he is also starting guitar lessons, continuing with tennis and always just being himself, laid back and mellow. Jakob had tryouts for the traveling soccer team, is learning Hebrew and has chosen the clarinet as his new weapon. Another Goodman (like Benny) playing his reed.

I thank all of you again and again for your unending, unqualified love. The following words mean more to me now than they ever did before: ‘You either got faith or you got unbelief/and there ain’t no neutral ground’ Precious Angel – Bob Dylan

DO Notes #4 06 October 2004
My most humble apologies for not writing sooner. I really wish to respond to everyone individually. But the outpouring of love and support, and the actual number of letters that I have received (Debra says we are well into Volume 2) makes it a daunting task.
I’m really beginning to comprehend how fortunate I’ve been in my life to have lived in so many places; but more importantly to have crossed paths with so many people who are furnishing me with fond memories and long lasting friendships. Some of these “flashbacks” via email ( grazie tantissimo Maurizio G & anche mi amico il signor Mechanico, il nuovo campioni di ciclismo), and phone calls (thanks Bunny G, always the fastest girl on activity day) have meant so much. And let me not forget the beautiful time I spent with Mr. & Mrs. Chiaf.
I miss being home so much. Debra has brought great pictures of the boys. However, I am so sad and lonely not being around the family. I remain upbeat when I speak to them, but it’s already two weeks in and we have such a long way to go. It’s troubling. They’ll be coming in this week for a short visit. But I really miss watching the ballgames with them, Jake tells me that his left foot in soccer is steadily improving and Adam sounds very comfortable about school.
It’s been a tough few days. No food or drink. due to an irritated gastric tract. Little sleep as I wake up in soaked sheets, shivering. They’re constantly giving me blood products, antibiotics, anti-fungals, minerals, etc. All these drugs and none that get you high. What a shame! But the doctors all say that I am getting better and that this stomach condition should pass within a few days. And Thursday is BMB day (bone marrow biopsy) and we’ll know if we are officially in remission. We will know if everyone did their homework and if Debra’s remission mantra did its work.
Everyone has said, that the donor drive last Sunday was fantastic. Debra & Co. really pulled out all the stops. I know that it took a lot of effort, and that other drives are forming in Seattle, Brooklyn (thanks to my cousins). I can’t say it enough how important it is to increase the donor base. Keep the love and support comin’, hug your families and realize that every moment you got is a precious one. Speak to you on the other side of the biopsy.

DO Notes #3 26-27 September 2004
My World; Hospital room. 5B- 38 at Brigham Womens Hospital.. It happens to be Curt Schillings number. Despite the fact that there is something I have not liked about the guys overall persona, no one can argue that he is a winner. So maybe the number connection will help me. And I will take all the help and luck I can get. This not a baseball thing.
Behind a full surgical mask and gloves, and basically no hair on my head, but a weeks growth on my face, I venture out a couple of times every day in my hospital issues to shuffle along the corridors of the two connecting pods. Much needed exercise for the body and mind. It would not be easy for anyone to recognize me. The only little giveaway is that I am accompanied by my 4 wheel IV pole. And for those of you who do not know me from my basketball days, I usually had to carry the burden of playing with underachieving big men. (Not you Alf!) Anyway, I named my pal here “Ruckstuhl”. He was the first and only 7 footer I discovered while coaching in Switzerland. He was skinny and gangly with extremely long arms, and got into everyone’s way including his own and the rest of our team. So here’s to you Christoph, wherever you may be.
There’s basically no communication among the patients. We are all fighting our private battles in our own ways. Sometimes you get a glance or nod, but in essence we are all our own islands up here on 5. And I really do not want to see or feel any negativity. I know my mission.
The nurses and their staffs have been wonderful. They are experienced, professional and have volunteered for this type of work. Some only work two 12 hour shifts a week. Others are full timers. They are truly here to help the process and I find their attitudes remarkable. Today we had a few rookies coming in to check for vitals. I wanted to reciprocate. They are all college educated and very dedicated.
My two Leukemia doctors, Richard Stone and Daniel Deangelo are brilliant, yet regular guys. The discussions are open and direct. I find their confidence contagious and feel comfortable with their assessments and protocols. What other choice do I have. “I ain’t going nowhere” They’ve seen just about everything in dealing with AML. And in the end, when the game is on the line don’t you want anyone but John Wooden or Sparky Anderson in their prime calling the plays.
Debra has become the Queen of the Jungle. Many people say or write to me,”She writes real well’, or “she really takes charge”, etc. Debra does so many things well ( we won’t rate kitchen skills at this present time, though she does make good reservations.) She’s been a true source of inspiration and strength. For those who do not know her well she has always been socially aware and active.
And let never forget what Sylvia G has done for all us; Her contributions are inexhaustible and inmeasureable in all the years since I have been in Boston. And my family and friends, there are no words to describe you’re the love and support, the interest and passion I sense about the present situation. Thank you from the bottom of my heart. Your emails are incredibly touching. I never could have imagined that I could effect so many people. Thank you.
Last, but not least, seeing Adam and Jake, albeit for a short time totally realigned my energy. Just getting a hug, and kiss, and being able to scratch and/or tickle their backs make my existence.
Speciall thank to Solomon Burke, The King of Soul for getting me through more laps around the pod today and a few bad hours in only the way you can touch someone’s soul.

20 September 2004

Dearest family and friends,
When asked by Spanky where he was going, my man Stymie of the Little Rascals, said, “I don’t know but I am on my way”.
Well tomorrow, I begin the journey. And all of you are coming along for the ride.
There are no words to describe the way your love and support has touched and inspired me. I have received so many emails and calls; from people I knew in the schoolyard nearly 50 years ago to people that I have never met but have somehow heard about my plight. I have laughed and I have cried these past weeks. But I have never felt that I was out there by myself. Thank you. And your generosity for the Donor drive has been overwhelming.
Going to war must elicit similar emotions; uncertainty, apprehension, hope, etc. Every one of us must deal with it differently and we all need to find the reason and the force that enables us to forget those fears and allows us to cope with the situation at hand. Much of that inner strength for me has been simply the fear of failure; of letting my teammates down. Rest assured that I intend to battle this unknown demon all the way until it’s conquered. I have no choice and I know no other way. Most of all I have Debra, Adam and Jakob.
If there are prayers to be said, please say it for them. They will need the strength and perseverance that this battle will require. It is heartbreaking for me that they have to be subjected to this trial. But all of us have no option. Ad and Jake are regular guys (my highest rating) and I am so proud of them.
What can I say about Debra that everyone already hasn’t said. She’s fired up, taken the lead and has not stopped working to make this situation better for the boys and me. I guess she likes me. Love ya, girlfriend.
Thanks Sari for being our friend. There is no one better.
And I thank all of “DO’s Angels” for doing almost everything to make our life a lot easier.
Thanks Rick for loading up my Ipod with enough music for the next 4 –5 months. Yes, there is a lot of Dylan on there along with a selection of blues, funk and everything else (Vivaldi!?) to get me through.
Thanks to Dick and Lloyd who always keep my affairs in order (and probably kept me out of jail).
And again, thank you all for taking the time to think of my family and me. I truly am the luckiest man on the face of this earth.
Speak to you after a while.