March 2009 Update--Already three years

On March 17th, I thought I would be starting a Phase 2 clinical trial at St Vincent’s Comprehensive Cancer Center. Unfortunately, I am not a candidate for the trial since all my test results didn’t meet the protocol guidelines. While I feel great, my MM markers insist they be assaulted with some weapon in the MM arsenal. I will begin treatment next week with an oral dose of Thalidomide, requiring only monthly follow-ups.

As spring approaches once again, I have made some fundraising commitments. I am reaching out to you even in this challenging year of financial upheaval because it is the work of the Multiple Myeloma Research Foundation-- their support of new treatments and partnerships with drug companies that continue to keep me and MM patients alive. When I was diagnosed in March 2006, I was told the average life expectancy was two-three years. Now three years later, I feel vibrant and strong, having had the benefit of two drugs the MMRF helped bring to market in the last two and a half years.

On Tuesday, May 5th at the 7th annual MMRF Laugh for Life Benefit will be at BB King in New York City. I am honored to serve as a committee member for this very special event, a night that will be filled with laughter—for me some of the best medicine for whatever ails you. Tickets for this event are $250.

On June 7, I will walk in the 5K Race for Research in New Canaan, Ct as I did last year with my sister Donna. We’d love to have a bigger team this year so let me know if you can join us. If you can't join us, please sponsor our walk.

Finally on August 30, Donna and I will participate in the Half Marathon in NYC. We are both very excited about training for this event as well as garnering your support.

This is a challenging time for all of us in so many ways. We are facing a myriad of unexpected changes: to our bodies, our finances, our approaches to life… I am grateful for this opportunity to raise awareness as well as money for MM. My involvement bolsters my hopefulness about the future. I am proud to say that 95% of the funds raised by the MMRF go directly to research. These research grants provide the best hope for patients with this to date incurable disease. It is through the development of these new drugs that the word incurable can be replaced with a far more benign word like chronic as researchers continue to pursue the cure. Finally these same research dollars will lead to development of new treatment options for 19 other types of cancer.

I appreciate all of the ways in which you have supported me through this experience. I have needed all kinds of support and am delighted to say that you have shown up for me in so many amazing ways.

Feel free to email or call if you have any questions about the events. I will keep you posted on the timetables for your donations. I’d love to have you join me in New Canaan, Ct on June 7th for Race for Research.

With love and gratitude,


Corinne

Things to consider upon sleeping

Things to Remember Upon Sleeping



Enter the multiplex
of your mind


Lovingly turn off
the projectors
in each theater


Extinguish every light


Hold a memory of tenderness til it feels like the satin corner of your baby blanket


Then
let it go


Slowly
drift
out of your mind
letting only
the tenderness
resonate
in your body
until morning

The Meaning of Life

I’ve doing thinking a lot about faith these days—faith during dark times—and have been asking many people how they define it, how it nurtures them when they feel lost. Quality of life is important and when my curiosity and get and go are dampened with no end in sight, I’d like my higher power, my guiding light to ease my journey.

The meaning of life—something to reflect on—sounds flippant but the meaning of life is to live it—with integrity—to see those around you, the community, the world and be a part of it; to add your heartbeat to the collective unconsciousness, raising its vibration; to understand who you are; to consider your own evolution and encourage yourself and others to follow their bliss; to know your body and explore its possibilities; to find some balance; to laugh out loud; to both nurture and rescue yourself; and to accept yourself and those around you as is; and finally to relax without judgment. Interesting, all the definitions are verbs. Meaning of life is to be.

Please share your thoughts to help me expand this. Help me open my eyes and my heart.

Ah, when they think lovely thoughts!

all that is good and beautiful has greeted me at work for the past five years!


Life affirming women of the Upper West Side

The Women of great neck who'd walk in your shoes, make you laugh and keep you safe. Find some of your own!

WAITING FOR DR COMENZO

Well, it could be a little like waiting for Godot especially if you didn’t bring the necessary distractions to stave off ontological insecurity. Usually I have some company for a visit, but I was prepared with the next two books for my book group. The first hour went quickly. I read quietly. Then a man and his wife and son sat down next to an older gentleman who was ready to talk. The younger man said he was checking in for his transplant and the older guy Fitz chimed in, “those rooms are beautiful.” I couldn’t resist. I told them I was just out of the hospital for two weeks after my second transplant. I told him the first time I had a view of the Fifty Ninth Street Bridge and that I had decorated my room reminiscent of college. The nurse came for him and he was off for his adventure.
Fitz moved over to sit next to me and regale me with stories of his boxing career, his early morning adventures, delivering milk with the milkman in his horse driven buggy. He told me he lived and Howard Beach and told me about the way things were with Al Capone-“If you can’t do the job right, don’t do the job!’ Johnny Blue Eyes The fate of Jimmy Hoffa Just how many people were in on the fix? He talked nonstop for about two hours before he was called in, but not before he let me feel his bicep-quite impressive and amazing for an 80 year old man and he showed me some pump on his chest the was a vestige of his gallbladder surgery of two weeks ago. So the first three hours of waiting for Dr. C passed quickly. I read for another hour and then the nurse called my name. There would be another hour to wait. I was exhausted! When I realized it was six o’clock and I would never make my 6:30 therapy app’t, I actually started to cry, the toddlers do when they’re overtired ad refuse to sleep.
I told the nurse my problem. She said he’d be in soon and he asked that I lie down. Like those toddlers too cranky for sleep who sometimes end up sleeping by putting their head down while they’re still standing up, I wiggled the back of my head into the pillow and dozed off until Dr Comenzo came in.

I have never had a doctor who kept me waiting like this before. When I was pregnant with my son, the most popular OBGYN (handsome with an Italian accent) always had a three-hour wait. I saw Dr Kraft who was wonderful and I always thought he looked like Superman, but I didn’t wait forever.
Whenever Dr Comenzo comes into the examination room, I feel that his attention is completed focused on me. I watch his mind sort through the data, patiently answering all my questions. I forgive him; I empathize that his day must be incredibly strenuous. He checks my heart rate and tells me that it’s elevated and that I’m dehydrated. He listened to the course of events over the last few days. He tells me that an elevated heart rate increases anxiety. I tell him that I have felt a tension in my chest-a nervousness. I told him I don’t generally feel anxious, dark dramatic depression is my specialty. He laughs and says you don’t look very dark today. When I first came home I was putting in 19 hours a day. You need to get out more I want you to come into the hospital tomorrow for hydration and again on Fri and next week too. This will pull you through the dehydration. Everything else is wonderful. The results of the bone marrow biopsy before the second transplant were perfect-no cancer could be detected.
I asked him when I could fly and he said August-finally free!
I have felt dehydrated before. After a long bicycle ride or an extensive walk, so I can home and drank water—a lot of water. Now one month after transplant #2, my doctor notes that my heart rate is 118 as opposed to its usual 70. He says I have to come back to the hospital twice a week for the next two weeks for hydration. I guess it’s not just drinking water; I’ll need an IV.
The receptionist made the four appointments for me and said, “You know the hydration takes three hours plus wait time and you can only use one hand. “It’s all about the iPod,” I said.

Josh's GI Jane

HOME AGAIN

Time for healing and Josh has arrived on my doorstep=no apologies-he’s broke and so he insinuate himself in my household It’s just a matter of time before things blow up but in the meantime there is no money, no sources other than me.Josh has always been an advocate of tough love, feeling if he pampered me, I slip down the dark rabbit hoile permanently. He’s a “Get up and walk it off. Then go back out into the field.” It does really inspire me, piss me off, but inspire me. He did do many things to help, but kept the under wraps so I wouldn’t rely on it.
I still can’t get any chores down, shopping, dishes, ways to make things easier for the woman who is providing. How can I recover in a setting where I am not the mistress of my domain? Maybe it’s the story of cancer patient and the way the world changed around her in a short time.
How do you treat the ones you love when they have cancer? There are those people who need you to be normal for them and often you agree this for both your benefits.
And there are those that want to help you keep you spirits up. They provide food and books and distractions. Life is the closest to comfort here.
Then there are those who are nervous in your presence because they think you’re a victim of the disease and that makes them uncomfortable. They fear what would happen if they were the patients. Some even worry it’s contagious.
I handed pick my own support group. Picked the people who will do the best job a job that gets you out of bed and into the world.

EXITING THE HOSPITAL

` The second time everything was different whereas I felt like a girl gone off to college filling her dorm room to making it her own, this time I felt like a prisoner and wanted to leave as soon as I could swallow two liters of fluid. Once the doctor gave me the nod for Thursday, I made it my life’s work to drink…and throw up and drink some more. I pleaded with my sisters to take all of my things home so there would be no doubt that I’d be leaving. I slept in my clothes all quite immature for a woman of 55,but I felt as if I had some control of myself.
When I woke I found that I had soiled my pants and I washed my jeans in the sink. The doctors made rounds and agreed that I could go home. More than anything I wanted to simply walk out the door on my own and take a cab to my apt. Lewis agreed to pick me up and when he arrived, the waiting game began. My drugs hadn’t arrived from the pharmacy. The nurses were busy, understaffed. Patients trying to escape were supposed to have patience. I was crazed.
The nurse who was caring for me found some scrubs for me to wear home and she suggested that I not put them on until I was ready to walk out the door-good advice indeed.
I asked Lewis to check in with the pharmacy to see just where the drugs were and to get the car-more need for control. He called me from the pharmacy-a little espionage-the drugs had been sent up to the 8th floor. An escort had taken them up over a half an hour ago. When I called for my nurse, she didn’t come in. Meagan, a nurse who had taken care of me during my last transplant, came in and told me she would help me with my discharge. She chatted with me about my sisters and my children and reviewed my home care. Lewis was waiting for me in the underground parking lot. The nurse’s aid that would be taking me down told me that I could only go to the front entrance. It was not policy! I dialed my cell phone sure that Lewis wouldn’t have any service underground. Fortunately he picked up and patiently did what I asked. I’m sure he thought I was nuts as I entered his car in my newly acquired oversized scrubs. Within moments, I needed the bathroom-my bowels were ready to explode! Lewis had left his wallet home something that was totally out of character and said there was no way he was speeding and I could just jump out at the next fast food restaurant. It was clear he had had enough of this.