1.11.11

ROSS:

I want to start off by thanking my mom's wonderful book club for holding their meeting in mom's room last night. She had a great time. There is a new project we will be starting soon in the waiting room that will be headed up by mom's friend Zelda. We will be folding 1000 origami cranes! According to wikipedia, "An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury." More to come on this...

Today we were given some news that is very hard to swallow. The neurologist seems to believe mom is facing an autoimmune attack. Basically, the immune system fights off cancer cells in the body, however, the cancer cells can look similar to the healthy cells of the nervous system. When this occurs, the immune system can start attacking the nervous system. He is attributing this to her loss of vision, acute numbness near her feet and ankles, and poor reflexes. In short, he is not expecting her vision to return. He said there is very little that can be done to treat this. One possibility he mentioned is an IVIG, which stands for intravenous immunoglobulins. He said this is effective in roughly 10% of people given this treatment, and not only that, it can cause kidney failure, heart attack, and other horrific conditions. Doctors are also unsure about how it even works on the people it does help. So, we're going to go ahead and pass on that...

As you can imagine, this was a very difficult conversation to have with this doctor, and it definitely took a toll on all of us. When the doctor left, I asked my mom what she thought, "well," she said somberly, "this puts a crinkle on things."

It is important to understand that, as of now, it is only speculation that this autoimmune attack is actually taking place. Both Aynsley and I are not convinced her vision is lost for good. We're by no means doctors, but still, we have heard multiple stories of friends who were told by doctors they would never see again, and I'll have you know, they're sight came back. What I told my mom is that everything we're hoping for is against the odds, but that doesn't mean our hopes are not possible. We have many things going for us that western medicine, and even science for that matter, cannot account for. We have so much love and so much support, and these things matter; they make a huge difference. For now though, mom is disheartened. This news was a major blow to her.

When I talked to Aynsley on the phone today she made a very good point, that it is okay for mom to get upset, she has every right to be discouraged. If it were me, I would have felt these emotions a long time ago. Feeling down or upset will be a good release for her, and soon, she will be able to return to focussing on healing. And heal she will. Our hope is every cell.

In some brighter news, I am sleeping at the hospital tonight. Just me, my dad, my mom and her commode... who could ask for a better slumber party?

1.10.11

AYNSLEY:
Mom rode down to radiation today in a wheelchair. Every other day that's she's had radiation, she's ridden in a stretcher. Sitting up requires a lot more strength, endurance and energy. And today, she was fine to do it. We don't yet have any medical confirmation about tumors shrinking, but our own anecdotal evidence (less pain, more strength, less slurred speech, more alertness, etc) seems to indicate that she's responding to treatment. Maybe we're seeing what we want to see. But I do believe in the healing power of prayer, positive thoughts, laughter, hugs, massage (I told you I was a hippie) and more importantly, Mom does too. Healing takes many paths, but believing that it is possible seems to be an important next step.

That being said, we're trying to keep everything as positive as possible. While I am definitely open to hearing everyone's stories about their own cancer or other battles, please keep the tragic ones out of Mom's ears for now. If you need to share some amazing magic treatment from Thailand that saved your boss's niece's neighbor, tell me all about it in an email-please don't suggest to my mother that she should be in Bangkok instead of where she is, getting phenomenal care from world class oncologists (Seattle Cancer Care Alliance is extremely reputable! Google them!) and quite possibly the most heroic nursing staff in the country. Every procedure, every treatment, every medication that Mom takes has been carefully considered and approved by her and her family. We all desperately need her to be with us for the next three decades and we have no intention of compromising that possibility. Please know that every decision is a reflection of the decisions she's making (she's 100% in charge of her treatment) and love is our only motivation.

Yesterday I reported that both my parents enjoyed a glorious 9.5 hours of uninterrupted sleep. This morning, the amazing nurse G was talking with my dad and thanked him for all his help the night before. "Huh?" "You know, thanks for being up between 3 and 4am, helping her with the bathroom and ice and everything." "What?? I gotta tell you, G, I don't have any recollection of that." And that, my friends, is how you get rest in the hospital. Forget that you were awake at all. It's truly sleeping like a baby :-)

Tomorrow she has an MRI scheduled to see if the doctors can see what exactly is interfering with her vision. The hope is that if we can identify where the problem is, we can treat it and get her vision back. Apparently the doctors are also all in favor of a clean-shaven Ross.

here's the beard that will disappear

1.9.11

AYNSLEY:
For the first time in over three weeks, my mom sounded like herself. He voice, her speech tempo, her sayings-everything was 100% normal. I think the radiation is working. Her pain is far less, so she's on less painkillers that slow and slur her speech. Also, maybe the tumors around her brain are shrinking, so there's less interruptions in those areas. She also had a great night's sleep; Dad reported 9.5 hours last night for both of them (!!!) The portacath is also wonderful. I admit, I was skeptical when they put it in, thinking we're not beginning systemic chemotherapy for at least three more weeks, but she's loving being "so high tech." All the blood draws happen through it and she's been able to swap oral steroids for intravenous ones. Since swallowing pills is the only procedure she ever makes a fuss about, this is wonderful.

All that being said, it's impossibly difficult being away. Today was my first day back in NY that I didn't work. I had some housework to do (amazingly, it didn't occur to Gary to sweep the floor in the week that he was home and I was in Seattle...though in fairness, he did a fantastic job cleaning the bathroom), errands to run, and a lot of sleep to catch up on; but by mid-afternoon, I was pretty upset that I wasn't at the hospital. Ross, Claudia, Dad and all the other friends and family are doing an amazing job and Mom is so wonderfully cared for. It's just hard being away.

The wi-fi in the hospital room is not working, so unfortunately you have to rely on my second hand reports instead of Ross's first hand musings. Hopefully that will be fixed tomorrow.

In the meantime, I'd like for you all to understand the magnitude of Ross shaving his beard when Mom gets her vision back. I suggested that he post a picture of himself on the blog so you all could see the magnificence of his beard. Gary said we could post a photo of ZZ Top and call it a day. Check out the New Year's Eve photo in the post from 1.31.10.

Move me to tears

ROSS:
Last night was a beautiful night. Rabbi Kinberg hosted a small shabbat service in mom's room, where we were joined by a small group of friends and family. Mom had on her colorful flower hat, and blue scarf. I found so much joy in hearing her singing along with the prayers, and even singing some harmonies. She was enjoying herself thoroughly. Towards the end of the service, Rabbi Kinberg led us in the Mi sheberakh, a prayer for healing:

May the source of strength who blessed the ones before us, help us find the courage to make our lives a blessing.

It was here when my mom began to cry:
Bless those in need of healing with the renewal of body, the renewal of spirit

Unlike Aynsley, I had not seen my mom cry once since before the diagnosis. I knew though, in that room, surrounded by loved ones, she was not sad. She could feel our love, our hope, our presence, our prayers, and it moved her to tears. She has been moved by every small act of kindness, from people she sees everyday, to people she has not heard from in decades. And everything seemed to add up to an overwhelming appreciation for her life that was too big to contain. And so she wept.

She asked me earlier to play guitar during the service, and after the Mi sheberakh, I took out my guitar and began to play. As soon as I started, I felt her hand press against my back, and once again, she began to cry. This time it was louder and heavier. It was uncontainable, like a river jumping its banks, free to create a new channel for itself. When I finished playing she was still crying. "I am just so grateful for everyone" she said.

Last night was the first time I truly realized the strength my mom has to carve out a new direction for her life. Every good deed and thought you have sent our way is a drop of water, and my mom is a mighty river that is untameable, unmeasurable and growing larger still.

This morning my mom had a cat scan to see where else cancer might be in her body. This test was to see if cancer has spread to her lungs and liver. Speaking for myself, I have been dreading these results for weeks. But I am happy to report that there is no cancer in Flynne Kirshenbaum's lungs and liver. This is the best news we have received! Now, we can focus clearly on mom's number one, main goal: getting her eyesight back. She has said she plans on doing this in the next couple of days. As soon as she does, I am shaving off my beard.

thank you everyone.

1.7.11

AYNSLEY:

The PET scan has been postponed until tomorrow. I'm not sure why, though even without that procedure, Mom had radiation, chemotherapy, an echo cardiogram, surgery to implant the portacath and a brain scan. We don't have any of the results yet, though the whispers are that the echo at least was fine. Due to having the portacath inserted, Mom couldn't eat during the day-the surgery was later this afternoon, so she went all day with no food. Though it sounds like she more than made up for it; when I spoke with her this evening, all she was talking about was the amazing food she'd been eating. Soup, muffins, salmon, cookies and above all, some strudel drink (huh? no idea) she was totally crushing on. She was a little stoned from the anesthesia and just so cute.

Between raving about different succulents, she kept telling me what an amazing experience all of this has been. That's a direct quote: "It's been an amazing experience." Who says that? Who in their right mind, after enduring two surgeries in two weeks, the complete loss of independence, loss of vision, baldness, daily uncomfortable radiation, tummy unrest...who says it's been amazing? Of course she's not saying that cancer has been great, but she wholeheartedly sees beyond the physical discomfort and is mesmerized by all of the people who have flooded out of the woodwork to hold her up. The only times I have seen her cry were 1) when she was presented with the healing quilt and 2) when I said goodbye. And it wasn't really crying, it was just a few tears from being so overwhelmed with love that they couldn't be contained.

A dear friend wrote her a letter today, expressing the awe he felt when thinking about her. I agreed and wrote back: "I have been so in awe of her-of her fierceness, of her willingness to allow what is, what life has become; and let go of what she can't hold. I am in awe of her hope. I don't have it. I would have mourned everything she's lost by now and she authentically is embracing what she has left." It's such a beautiful way to view life. It's such a gift to know and love someone who feels that way. Every bad diagnosis I've gotten in my life (and there have been 3 and they don't come anywhere close to this) has led me to tears. I came out of the sorrow to rise up with fists, but I go to that place of pity. When I first heard her diagnosis, I was so angry that it was her instead of me-I'm the fighter, the one with high pain tolerance. I'm the one who toughs everything out. I was worried that she wouldn't fight. I had no idea. She fights so gracefully that you don't even realize it's fighting. She is so focused on all of the positive things this has brought that the negatives fall by the wayside.

When I teach yoga, I ask the class to set an intention for their practice; it can be physical, emotional, personal or community oriented. Sometimes I'll set the intention for them. Yesterday we (I) decided to bring yoga to the radiation oncology department and set an intention for both Mom and the technicians: to bring back her eyesight. I explained to them that I was a little bit hippie and that sometimes we do this and they were all totally on board. And Mom was, too. Since then, she keeps talking about setting intentions and how she continues to do so. It makes the treatments more bearable. It helps her focus on something she really wants, on a goal to achieve, on a positive note. "Amazing experience." Indeed.

Blog Comments

AYNSLEY:
Hooray for you smart people-I didn't have the correct comment setting enabled for the blog. You all should be able to post comments directly to the blog now.

But emails are still great, too.