There are times when the world collapses down to just your personal bubble. Some of those times are amazing, some are difficult.
When my boys were born the world consisted of my wife, Jean, a doctor, and a nurse. All that mattered, all that was important, was in that bubble. The smile on Jean's face as she was handed Adam, the prayers on our lips as the nurse resuscitated little dark Aaron from death, they were all that existed.
Other moments have collapsed the world down onto me. In 1991 when a surgeon came down the hall of Hackettstown Hospital as I left Jean's room. He look at me and said, “Its not what we hoped.” The world felt very small at that moment. I had to turn around and go back in that room and tell my wife something very bad. My face told her before I said a word. Our little part of the world just changed.
Mastectomy, reconstruction. How important you think a breast is when you are 39 years old. How worried you are about your hair. You rebuild and cover up. It takes a long time to put that in perspective. No one feels you are being silly to worry about these things. The medical people know it's OK to strive to be “normal” and help you. Turns out that embracing your personal normal is the key.
Chemo enters our world, and a young oncologist, Dr. Usha Niranjan. Right then a few words set us on a course of positivity and hope. “What I can do for you with chemotherapy is 25%, what you do with your attitude is 75%” If Dr. Niranjan had been able to redo that after she knew Jean it might have been 5% to 95%. Jean was the poster girl for positive and proactive. She needs to raise her boys, don't make the mistake of getting in the way of that, cancer.
The years between diagnoses and metastatic are a blur. They were there and wonderful but it's hard to grasp them now. 10 short years.
Much too quickly we were fighting breast cancer again. All other battles pale in comparison to a war waged in the body with chemical weapons. The collateral damage is your hair, your appetite, the feeling in your hands and feet, nausea. How strong she was, how determined to raise her boys and be my wife. She became an expert at managing side effects and knowing her body and it's responses. Her strength and positive attitude was incredible, monumental, inspiring, overflowing. She could look up at you in her worst moments and tell you, “I'll be OK” and you'd believe her.
The side effects keep getting less. Jean is lasting right through a generation of chemotherapies.
We went to a radiation treatment consultation in Flemington. The Dr. came into the room with her folder, which he obviously read. We had probably been joking around as usual and probably smiled up at him when he came in. He look back and forth from Jean to I and asked, “Where is my patient?” Jean held up her hand. “No, this person is sick!” , he said waving the folder. Jean might have had breast cancer but she was rarely sick.
Her sister, Becky, would take her to those radiation treatments (and many many others, God Bless my sister-in-law) and they would have wonderful discussions with other patients in the waiting room. After a few treatments the nurses said they love it when Jean and Becky come. The girls wondered why and asked. “You get the whole waiting room talking” was the answer. “Don't people always talk?” “Of course not, only when you are here” the nurses told them. Special special.
Jean would talk to her fellow chemo patients as they sat with an IV in their arm, or port. (Jean thought we should be born with a portacath in our chest) Her chemo friends would get a big infusion of Jean energy as a bonus. Many asked to be scheduled when Jean was due back. No Joke.
New York City and the Weill Cornell Breast Center.
You test out of chemotherapies. You take them until your cancer numbers go up, bumps appearing where no bumps should be, then you find another drug. When Jean ran out of drugs her wonderful Dr. Niranjan found Dr. Vahdat and the people at Weill Cornell. There were study drugs. One from Bristol Myers Squibb gave us about a year and a half. Jean barely walked into that study and responded with fight and energy, amazing everyone. We did things and went places while on that BMS drug. Thank you to all for that time, what a wonderful gift. To think we could have so very easily missed that drug and being connect to the study is scary.
NYC was the summer of 2007. I know because I have pictures so I can look at the dates. Jean on the other hand would have known the dates. If our toaster died she would say something like, “Well, we got that the weekend after Easter such and such a year, we went shopping on Sunday, so that toaster is 5years, 4 months old. Not bad for a toaster that cost $27.” AND SHE'D BE RIGHT! We'd go to a new Dr. and he/she would ask, “So, what treatments have you been on?” Jean would answer, without notes mind you, “Oh, all of them, I was on X in (gives year and month) to (gives ending date and why she stopped that drug), and on Y from (gives year and month) to (gives ending date and why she stopped that drug), and Z (gives year and month) to (gives ending date and why she stopped that drug)” and on and on right through the list. Amazing.
So, my lovely Jean is helped by the 2007 study, gets a reprieve and is off and running. She has a bucket list before the movie made it a household word. Now, I couldn't afford to take her all the places on that list if we had another 50 years together. She knew and didn't mind, she just liked her list.
That September of 2007 we did Nova Scotia in our Miata sports car. “My Miata!” she'd remind me. What a wonderful ride. But then every Miata ride was wonderful with Jean next to me. Jean thought the first Miata was silly but humored me. It might have been my idea but after we shared a top down drive every night after work for a while it was OUR little red sports car. It became a common compassion that brought us closer than we had been. Thank you for the love, Mazda.
That same fall we did Front Royal VA and the Skyline Drive with our friends, the DePauls. Sports cars and great roads, perfect. In February of 2008 it was off in an airplane to Las Vegas with her bro Allen and his witty wonderful wife, Gina. Awesome time. Thanks A and G.
We traveled to our friends, the Vergos, home on Lake Ontario. I can easily overuse the word “special” when talking about our friends. Oh well, they are special.
August 2008 she is in Tennessee celebrating Uncle Billy Rogers' 80th. I know, I checked the date on the pictures. There she is with red hair just growing in and smiling the biggest smile. Do I love my pictures? You bet.
October 4, 2008. I give her a last minute party for 17 years of being a breast cancer survivor. I think on Thursday she said, “Do you know it will be 17 years this Saturday?” and I kicked into high gear. We totally surprised her (not easy) and the outpouring of friends, family, friendship and love was completely and totally overwhelming. Thank you all.
We will have her another year and one month at that point. 18 wonderful years of beating breast cancer. One moment of cancer winning, 18 years of thriving. It is the thriving that counts. It is the taking the 25% that the Doctors can give you, and the 75% that is the power inside you, and thriving.
She made the 25 – 75 rule hers and we all felt the power. Feel it, it is in you.
Jean , our firecracker.
July 4, 1953 to November 12, 2009 to forever
