Dear Friends,

Thank you for your patience! It’s been a tough two weeks. I really needed to lay low and be with my thoughts and feelings. I’ve been grappling with the reality of my disease from a statistical perspective. It’s not good from that angle. I don’t think we’re talking about double digits for survival. The drug I’m taking is probably the best one available for my specific cancer, but at best, current research shows that those who responded to the drug experienced limited tumor shrinkage before becoming resistant. Has anybody survived stage 4 lung cancer? At best it’s been living from drug to drug, relapse to relapse. But how many relapses can a person survive? There is no more taking life for granted. Cancer is always. This heavy weight is always, or is it?

The good news is that research continues and hopefully newer and better options will become available sooner than later.

With the awareness of all the medical facts, I couldn’t help but mourn these past days. I found myself having flashbacks, reliving poignant moments in my life. It was deeply painful but also healing to feel the feelings. I was so so sad to contemplate the possibility that I may never see my children grow up and I was terribly afraid of what would become of them if I’m gone. Every hug made me sad. How many more hugs would there be?

I had this horrible feeling that I may have no real future and that so much might never be experienced. Every thing I did seemed to be colored by this disease. Out in the world I felt self-conscious – I still do. I’m the one with cancer. Sometimes I felt jealous of the carefree, easy, eat anything, do anything life that everyone else seemed to have. And the pain in my body is a constant reminder of the disease and my mortality. I realized that so many things I dreamed of and so many decisions that have been put off, may never come to pass. Where is there room for long-term investments? I went shopping for a Shabbos robe with Mom and, at the cash register, I actually thought to myself that I should consider how many times I’ll actually get to wear the thing before potentially wasting the money. After all, one has to be frugal in times like this. I pushed the thought aside and bought the robe.

I was afraid I was becoming really depressed. BH, I started to talk about my feelings, with my mother, and with a few close friends. Each time I talked about it I felt a little better. I started walking in the park. It feels so good and I feel so great every time I wave at a stranger and say hello. Na’ama told me it helps to take the focus off yourself. Right on! After my first walk I visited the classroom downstairs and I read a fun book. All the kids came and sat with me while I read to them and then they went, quiet as mice, back to their work. It’s so healing to be in the classroom with the children.

I started another writing workshop with Ruchama Feuerman and I’ve been writing the beginning of the story, the forty-eight hours right after the diagnosis. I was so traumatized and terrified. It’s very painful writing, but hopefully healing. I can’t wait to get to the part when the emails started coming in and I was overcome with love and gratitude, and the part when Dr. Gejerman said “we’re going to get you through this”. That’s when my survival instinct kicked in. That’s when Hashem became my partner.

I started to think that maybe the sadness is so necessary in order to move through the process of letting go. And then I got a glimpse of the end of the process, when real acceptance becomes possible, when I might actually have a life that I can truly fully live. What an unbelievable opportunity! Past the sadness is the here and now, each moment precious, precious, precious. Without any certain future that’s all one can have, that or deep depression, the goal of the yetzer hara. We all want that precious present, but how much of our time is spent dwelling on the past or worrying about the future? There is tremendous freedom in living in the moment and I want that. I experienced it in the first weeks and I want it back. It’s a good life, where there is no “bad”. It’s all good and every moment is an opportunity to give and receive love, G-d’s greatest resource.

I’ve been hoping to really reconnect to Hashem, to get back to that high place that He took me to in the beginning of this journey. Opening up to my mother about what’s been going on for me rekindled the closeness between us and I felt hopeful again that Hashem is also near if I let Him in. I’ve been appreciating people a little more and daring to be more vulnerable again. Sometimes my davening is a little bit closer to what it was in the beginning. When I found myself crying sometimes I remembered to beg my Tateh in heaven for mercy. I’m appreciating His miracles, small and subtle. I appreciated the breeze He blew across my face while I was lying in bed waiting for the Tylenol to kick in. Sometimes I breathe in His healing energy and let out my breath will all the yuck. I’m meditating on His healing light fixing my body and my neshama.

The mind is amazing. It protects us from overwhelming and dangerous levels of pain by bringing to our consciousness only so much at a time. It looks like I’ll be processing the painful thoughts in stages. I’m okay with that, but depression can be very scary. I want to fully feel what I need to feel so that I can keep moving forward. I don’t want to go through the steps of healing because I’m afraid of death. I want to get well because I love life. I think I can get there one day.

I contacted Bernie Siegel this week. I wanted to find him since I was first diagnosed. When I was about 12 I saw something about him on television. He was doing amazing work with cancer patients, using mental imagery for people to heal themselves. I never ever forgot about it and I knew I needed to find him. He’s written numerous books on the mind-body connection, with fantastic insights and practices to harness mental energy for self healing. Well, it turns out that Yoni’s cousin is Dr. Siegel’s next door neighbor and, unbeknownst to me, he took it upon himself to talk to Dr. Siegel about me. Another miracle! Dr. Siegel said I could be in touch with him. It was an honor, a privilege, and a great chizuk for me to hear back from him. He looked at the blog and said that I have the potential to be an “Exceptional Cancer Patient” – the type that transforms themselves through the process. His Exceptional Cancer Patients often exceeded the expectations of all medical professionals, and sometimes achieved complete cure in the face of impossibility. Dr. Siegel also gave me sage and practical answers to my specific questions. I look forward to meeting him in person. In the meantime, my mother ordered some of his guided imagery tapes and I can’t wait to incorporate them into my daily “routine”. I hope that Yoni and I will be able to attend a retreat in the fall that is based on Dr. Siegel’s work.

I’m sick of macrobiotics. So many limitations and so much fear that if I veered off the diet or quit altogether, I’d forfeit a strong chance to affect my mortality. I lost my appetite and 6 pounds. I asked Dr. Siegel about it and he said what I had expected. The miracle successes for cancer patients on macrobiotics is about 30%, which is the placebo number. Those people most likely cured themselves because they believed that macrobiotics could cure them. I think that if someone believed they could be cured on pizza and chocolate they might also be successful. The mind is a powerful thing. Dr. Siegel said I can’t do macrobiotics if I’m miserable about it, that psychology has a powerful effect on genes. So, I’m going back to an enhanced organic, whole foods diet. I went to the pizza shop today to get lunch for the kids and I looked longingly at the cheesy pie that just came out of the oven. It was so good to realize that I choose not to eat the pizza, not because I CAN’T eat the pizza. Very freeing to come from choice instead of fear.

So, after the CT scans Dr. Krug gave me the complete pathology report from the biopsy taken during surgery. Well, I definitely have the EGFR mutation (which explains my good initial response to the XL). Apparently, people with the EGFR mutation have something missing from the DNA chain. Well, in my case, there is an insertion instead of a deletion. Dr. Krug said that there’s only one case like this in the medical books, and only 2 other known cases in the US. He sort of threw up his hands and said they don’t know anything about this particular presentation. I guess we’re all in the dark. We actually laughed, you gotta laugh. Hashem works in such mysterious ways. It’s good to remind ourselves that He’s in charge.

In my last email I neglected to express my infinite gratitude for all of the chesed and the davening, mitzvos and segulos done in my zechus. The shrinking tumors were most certainly attributable to everyone’s incredible efforts. Please don’t stop! We still have so far to go.

Have a blessed, beautiful and uplifting Shabbos!

Love,
Simcha Esther

Dear Friends,

I have very little time tonight to write all the things I'd love to share, so I'll just get right to the point.

Yoni and I met with Dr. Krug today and he went over the findings from the CT scans. Well, it seems that most of the tumors are shrinking somewhat. He says this is very good. Mostly what they hope for is that these chemotherapy drugs will keep the tumors stable for as long as possible, so shrinkage is an extra good thing.

However, there were some issues with my blood work today. A follow up blood test next week will determine if any action needs to be taken. Please don't stop davening! We need to blast those little storm troopers to smithereens - and we need to do it before they figure out how to outsmart the drug.

G-d willing, I'll write more tomorrow.

Much love,
Simcha Esther