Healing Ceremony and Some Tough News

It has taken me a couple of weeks to sit down and tell you all about the wonderful healing ceremony that we held at our home. I’ve been very busy with the end of school, getting the kids ready for camp, the bill deadlines for the legislative session and the pain that I’ve been experiencing.

As a quick recap, Rabbi Wolfe did an absolutely lovely job of leading the ceremony – drawing in everyone. We burned that terrible document that spoke to my demise. We planted a pomegranate tree on top of the ashes. We shared love and laughter and some sorrow. The highlight of the day was when my dear friend from childhood, Sarah Tunik, read a poem that she had written for the occasion (inspired by Maya Angelou’s Still I Rise ):

You may write me off as history

With your fancy charts that lie

You may quote the stats and frequencies
But still, the outlier, I'll rise.
 
Does my confidence surprise you?
Why are you beset with gloom?
'Cause I walk like I've got life
instead of calling  for my tomb.
 

Just like moons and like suns,

With the certainty of tides,
Just like hopes springing high,
Still I'll rise.
 
Did you expect to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.
 
You may write about my ending,
You may cut out my insides,
You may radiate and then sedate,
But still, like air, I'll rise.
 
Does my longevity shock you?
Does it come as a surprise?
That when you read my stars
I made ashes from the lies?
 
Out of the fire,
I rise
Up from a hospital bed
I rise
I'm a great field of chodosh[1], wheat
Bending and blowing, to grow and not beat
There will be no harvest; I count my own days
I rise
Up from the fire, with spark and with praise
I rise
Bringing the strength of friends wide and near

I still survive, with hope, and not fear.

I rise
I rise
I rise.
 

As part of the ceremony, Ellie wrote a poem that she shared with everyone:

 

Health can come from drugs and drugs,

But it could also come from love and hugs.
Health can come from praying, too.
But in this service, it comes from all of you.
 
A huge thank you to everyone who was able to join us for the ceremony. It meant so much to our family to have so many friends envelope us with their support.
 
In other news, many of you are aware that I’ve been in a significant amount of pain for the last couple of months. We had many possible causes for the pain: internal hemorrhoids, nerve damage from past surgeries, scar tissue, shortened colon issues, potential new food allergies. I went in for a CT to try to figure out what it was, but nothing showed up on the CT. I finally convinced the colorectal surgeon to order a colonoscopy.
 
On Thursday I went in for the colonoscopy. The doctor was sure that we wouldn’t see any cancer since nothing had been seen on the CT scan. Unfortunately, he was wrong. Hiding in my scar tissue was a tumor that measured 2-3 cm in size. The mystery was solved as to why I was in so much pain.
 
This is not good. I don’t know what the next steps will be. My prayer is that we can come up with an option that does not involve removing my colon. I’m guessing that we will begin with radiation – which doesn’t sound pleasant, but it would be a heck of a lot better than removing my colon.  I also hope to stay on my wonderful trial.
 
On Tuesday, I’ll be meeting with Dr. Fisher to discuss his recommendations for next steps. While this tumor is causing a lot of pain, it is not in a vital organ. People live without colons. The main goal is to live.
 
I’m so tired of the struggle. Fortunately, the healing ceremony came at the right time. I need the strength of others to pull me through this difficult time. Please keep me in your prayers. I have a feeling that I don’t have an easy road ahead and I will be leaning on all of you to support me as I conquer this new challenge.Health can come from drugs and drugs,
But it could also come from love and hugs.
Health can come from praying,too,
But in this service, it comes from all of you"Health can come from drugs and drugs,
But it could also come from love and hugs.
Health can come from praying,too,
But in this service, it comes from all of you.""Health can come from drugs and drugs,
But it could also come from love and hugs.
Health can come from praying,too,
But in this service, it comes from all of you."

---

[1] “chodosh” is wheat, not to be eaten before the counting of the omer is finished

It’s Father’s Day Fund Time Again!

So – it snuck up on us this year. It’s time to give your father a meaningful gift (since he really doesn’t need another tie). For the umpteenth year in a row, my dear friends at PMSA continue to promote their brilliant idea of giving to cancer research in honor of your father instead of spending your money on just more “stuff” for dad.

As you may recall, 6 years ago, the Father’s Day Fund was originally inspired by my initial cancer diagnosis.  The goal is to connect donors with cancer research institutions throughout the country.  You just click through their website and all of your money goes directly to the cancer institutions. None of your money goes to administrative costs. And – they provide you with a lovely card to print out and give to your father.

While there are many promising discoveries out there, unfortunately, the possibility of “cure” for me is remote.  Cancer institutions are experiencing an extreme reduction of both public funding (NIH dollars) and private venture capital dollars. It is a dire time in cancer research – funding is decreasing while the number of cases of cancer continues to rise. We need to figure out how to stop this disease in its tracks.

I hope to celebrate many Father’s Days in the future with both my own dad and Pat.  The only way that this will come to be is if there is significant new research in the cancer arena.

Please help spread the word! With Father’s Day on Sunday – we don’t have a lot of time!  To make a contribution, go to www.fathersdayfund.org. Go there now – don’t hesitate – just go!

(Oh – and I haven’t forgotten to write about my wonderful healing ceremony, but I’ll save that for another day since Father’s Day is here!)

Healing Rituals

In February my Sacramento-based acupuncturist passed away unexpectedly. I wrote about this in my blog at the time…how devastating this was to his loved ones and to his patients, including me. But at the time, I didn’t write about one of the shocking events that happened after his death. I didn’t want to focus on it. 

But today I need to.

You see, when he died, his office sent me all of his files on me. I wasn't aware that he had kept from me an "Ayurvedic chart" that he had commissioned to tell my fate. This reading, based on birth date and time, said I was going to die as early as next July. While he had given me part of the chart when he was alive, he had compassionately not shown me this. Of course I have known over the past 6 ½ years that my life expectancy isn’t great, but seeing the date of my demise written down on a piece of paper – well – it took my breath away when I read it. 

Panic stricken, I talked to our rabbi in Davis, Rabbi Wolfe, who counseled me that Judaism does not subscribe to this sort of thinking. We do not believe that your fate is predetermined based on birthdate and time. We believe that the individual has the opportunity to impact his/her fate throughout life. Rabbi Wolfe then counseled me to burn the chart.  He has kindly offered to do the burning with me and combine it with a healing ceremony.

We have decided to have the burning/healing ceremony next Sunday, June 8 at our home in Davis at around 4:30 pm. You are all more than welcome to come – although no one should feel obligated! Just let us know if you’re planning to join so that I can plan accordingly. As a Jewish mama, I want to make sure that there is plenty of food and beverages for everyone!

In other wonderful healing ritual news, my dear friend Miriam Ferris (she’s the woman who took me for my first time to the mikvah), asked her challah baking group to bake challah for me for this week’s Shabbat. Apparently, if 40 women or more bake challah and pray on behalf of someone, it is a very powerful force. Every Thursday, her group gets a text telling them who to pray for as they are baking. She asked the coordinator to put my name in for this week because she knew I was in crisis (which I’ll explain in a minute). This week was my week for women around the world baking challah and praying for my speedy recovery. In addition, my friend Alan Caplan has his synagogue in Israel praying for me during their daily prayers. They are planning to say a special prayer during a ritual that they’ll be doing for Alan's newborn daughter. I feel so blessed to have these very special prayers being said for me as I continue on this difficult journey.

So – why the increased requests for prayers this week? Over the last several weeks, I have been experiencing significant pain and symptoms that seemed to indicate that I had a renewed blockage in my colon. The pain continued to worsen and became so bad that I finally called Stanford. They scheduled me for an emergency CT scan. On my way down, I knew that there was a possibility that I would be placed in the hospital that afternoon for emergency surgery which would most likely result in a permanent ostomy bag. As you may recall, my colorectal surgeon had told me not to get any more cancer in my colon because he had no more colon to cut! He told me that the next time he had to operate that he’d have to put on a permanent bag. I was full of dread.

Fortunately, I was wrong. My colon wasn’t blocked with cancer. They don’t know what has been causing the pain – but it doesn’t seem to be cancer.  Although I haven’t received the official report, it appears that there has been very little cancer growth – a lymph node next to my aorta grew by a few millimeters and there was only a small additional tumor. Otherwise, everything else looked stable including my lungs and liver which continue to be normal. Thank goodness I’m not sporting a permanent bag right now, and we continue to seek the source of the pain.

On Monday I am scheduled for my next PDL-1 infusion. It’s doing its job keeping cancer in check. I hope to see many of you next Sunday where we will have a chance to snuff out that terrible document that speaks to my demise and reaffirm that we all have power to impact our fate!