"Date Night" - Oct 14, 2011

Date Night

When we first had our child, the unsolicited advice frequently dispensed included, "make sure you carve time out for yourselves - date night!" Needless to say, we rarely followed through with this suggestion, not for lack of interest but, well, many of you know how it is, best intentions and all.

Thank you Mitch Berger. 

Because of you we have been able to have two date nights over the course of the past few weeks. Our first one was the night after surgery. Stephen out of ICU and in his private room, suggested I stay on the ever-so-comfortable fold-out chair beside his high-tech hospital bed. We shared his plum chicken and prune dessert, watched an episode of Modern Family on the mini-TV, and spent the night among the beeping of machines and hourly check-ins by nurses. Not what we imagined date night to be, but somehow fun nonetheless.

Today we had another date. This time to hear Vickie Kennedy, Dr. Berger, and several members of his team discuss the innovations UCSF is working on, not just in tumor care/prevention/cure but also on enhancing the quality of life of brain tumor patients and their caregivers. Mrs. Kennedy, aka Teddy Kennedy's widow, spoke inspiringly about living life fully, "enjoy your family, enjoy your life." She shared many anecdotes of their final year together, one filled with much happiness.

Two points in her presentation stayed with me. She referred to Senator Kennedy's brain tumor as "our brain tumor." As his primary caregiver, it not only impacted his life greatly, it did hers as well. As you can imagine, their relationship continued to deepen because of this experience. She did also say, that in dealing with the doctors, he maintained his public persona of nice guy, while she became the fierce lioness while questioning and planning treatment. Not sure about being the fierce lioness, but I do think Stephen has lots of that nice guy in him.....

The other concept that stayed with me was her description of "living in three time zones." As soon as it was clear what his diagnosis was, Vickie saw her husband live in the practical, present, and goal oriented zones. He took care of personal business, finances, spiritual, etc. by meeting with the necessary people and squaring away what he needed to. They made a commitment to live in the present, enjoying life and not grieving until it was time to do so. And, lastly she described the goals he set for himself, making it back onto the Senate floor to sign the Medicare bill, speaking at the Democratic convention, seeing "his President" be inaugurated. He strived to make these goals happen.

Equally inspiring at this brain tumor talk date, was hearing Dr. Berger and his team describe the research and advances they are making. The focus today was on quality of life issues and specifically a model they are proposing that will take patient and caregiver from the moment of diagnosis through treatment and beyond and offer consistent care and resources of every kind. This proposal is still in the fundraising stages and we look forward to learning more about this plan as they come closer to implementing it. In the meantime, we have inquired about donating to this effort for patients and caregivers.

We have been overwhelmed with the generosity of those in our school communities. As you know, The Friends School families funded us for healing treatments and The Nueva School families did so for our newly minted "Garden of Wishes" and additional expenses. From these funds, we are donating $360 to UCSF to help bring their vision of care taking to fruition. In the Jewish tradition, when offering a monetary gift, it is customary to do so in multiples of 18 (the numerical value of the Hebrew word for life - Chai - adds up to 18). We thank you, our caregivers, for making it easy to offer 20 times life to future caregivers in honor of our brain tumor.

Suzanne

Stephen and Dr. Mitch Berger today on our "date!"

"The New Normal" - Oct 13, 2011

I think I finally understand the definition of "the new normal." We now go about our days very differently than we did just a few weeks ago and are more hyper aware than we have ever been. With that, we are also more grateful and present.

At the height of the new normal, came the conversation with the radiation oncologist yesterday. Suddenly what seemed unimaginable and scary, started presenting as doable and necessary, a new routine for a little while that we will graciously accept. The treatment plan is not yet set in stone but we are gearing up for the likelihood of six weeks worth of radiation and a chemo plan we will learn about next Friday. We continue to feel optimistic and confident that the care Stephen is receiving is as good as it gets.

Below is a picture of the three of us (two looking more tired than the third....) yesterday dropping Anemo off at school, before staple removal and the radiation meeting. 

Will send along more news as we receive it.

Much love, Suzanne

Next Steps - Oct 7, 2011

Dear friends and family,

We received a call last night from Stephen's oncologist with more news. Everyone is pleased with the success of the surgery and, as far as they can tell, the tumor was removed in its entirety. The pathology results came in and the tumor did go up in Grade (the last tumor was Grade 2 and this one he wished he could call it a 2.5, because of the predominance of the Grade 2 cells, just a little bit of Grade 3 - but there is no such thing). As we mentioned before, due to the fact that it was a recurrent tumor, treatment was likely. Yesterday's phone call confirmed this to be the case. We will meet with the radiation and oncology teams in the next few weeks to learn about all the options and choose a treatment path.

Thank you for your continued care and well wishes.

Suzanne

Recovery has begun! Oct 1, 2011

Recovery has begun!

Stephen has been home for 48 hours now and is in full recovery mode - mainly possible because of our family, friends, and school communities. We are being nourished physically, spiritually, emotionally, and intellectually. Scheduled food deliveries from Nueva families will begin next week, while unscheduled ones have been appearing at our doorstep. A Friends School family stopped by to offer us a Rosh Hashanah meal, a meaningful gesture as we have so much to be thankful for in this New Year and no time to really acknowledge it. Anemo led us in the blessings for bread and wine (thank you teachers at Temple Emanu-El!).

When asked what we needed besides food deliveries, we mentioned that we had planned on cleaning our yard and planting a garden this fall, creating a peaceful sanctuary for Stephen's recovery. Since the surgery happened sooner than we expected, this too is being taken care of for us. Nueva families will be donating plants, while a former Nueva parent and a colleague and friend have spent countless hours planning the "make-over." We received generous support from a family to have the yard cleaned and supplies bought. The first lemon tree arrived this afternoon! 

The Friends School community gave us the gift of multiple massages and acupuncture treatments. Stephen had one this afternoon and was able to relax in a way he has not in a long time, especially with the lavender, sesame, and almond oils. I look forward to scheduling one for myself next week.

Friends and family are calling from far away, others are bringing books, stories, and offering movie suggestions. Temple Emanu-El families are providing playdates and rides for Anemo.

With all of you taking over where the doctors left off, Stephen is continuing to get stronger and healthier. 

Tomorrow we celebrate Stephen's 43rd birthday. 

With much love and gratitude, Suzanne