Tuesday, May 24, 2016

Scan is Scheduled

We have our magical f-DOPA PET scan scheduled, and possibly the best part (other than the enhanced results) is that insurance appears to be covering it!

Our scan is on June 9th, at UCLA Medical Center. The results will be on Monday, June 13th.

Ha! Makes me laugh every single time.

I bounce from terrified, numb, then a little ambivalent, and finally total denial. That's when I get my good workouts in, though, during the denial phases - so there's always a silver lining. 

Also, you can't beat an excuse to spend time in Southern California! Time with family friends, and ocean breezes. We'll have three full days to relax, and visit, and laugh, and get our toes in the sand. Once the scan is done, it's just waiting for results from there, and there's nothing you can do about that. Might as well enjoy!

Start Now, The Creativity Journal by Kate Neckel

I haven't convinced myself that the tumor has been growing again, even though that's the most probable reality. I have only a few remote ideas about what I will do if I need to revisit my treatment choices, to reevaluate and add more, or overhaul everything. I have no idea what we will do. We're working on a multitude of choices, kind of like a triage, what is easy to add, what can we afford to add, what have we not looked into, what would be synergistic. I've been doing a lot of research, so please forgive me for the lack of communication on my end. If you have an emergency, please put it in the subject of your emails so that I can address it more timely. Otherwise, I'm going to keep chugging along, nose to the grindstone and all that. Thank you for your patience! 

Friday, May 20, 2016

Grit: The Best Four Letter Word

A girlfriend just introduced me to the concept of "grit". I knew the word well, although in my family it's termed sticktoitiveness, what I didn't know is that a curious woman is researching it. Angela Lee Duckworth has evolved into a scientist (she was corporate, then became a teacher, then went back to school to become a psychologist), and her work focuses on determining what is "grit". She did an amazing Ted Talk, sharing what she had learned, and at that time she didn't know if grit could be taught. Here's the cool part, one day, probably not too long after her Talk aired, Coach Carroll happened to turn on the tv to the Ted Talks, and listened to Angela. The subject so moved him, especially the part where she wasn't sure how to transfer or teach grit, that he immediately got in contact with her.

It was fateful that Coach caught Angela's Ted Talk (of all the days to turn on a Ted Talk, and for all the TT's out there, it had to be this one), but it was grit, that drove him to reach out. See, Coach has been living a gritty life, full of purpose, and drive. With strength, and humility, and he's been teaching it. 

So tonight, my girlfriend invited us to attend the Town Hall Meeting at Seattle University to listen to Angela and Coach talk about what it means to have grit, how you can foster it in yourselves, how we can nurture it in our children, and in those around us. And good God it was powerful. And it was just what I needed. 

You see, even though I'm not convinced I'm dealing with a recurrence, I still have cried quite a bit about this turn of events. At first, I thought to myself, I can't possibly handle a fourth brain surgery. Not all that pain again, not with the danger of my complications, the blood clot and dura mater hardening, the risk of dying. What if I lose my language or mobility like I did? The months of speech and physical therapy, my God, I can't go through that a second time, I don't have the energy. As those fears swooped in, I realized, I'm not really scared of a theoretical surgery, I'm bawling because of the freaking trauma I've endured. It was residual emotional pain that rides the waves of those memories. It's powerful, and traumatic. 

Listening to that Town Hall Meeting was moving. It was catalytic. It was comforting to hear that you can't lose grit, you may not always be in touch with it, but you can't lose it. And if you're gritty, that doesn't mean you don't need encouragement, or guidance, or best of all, coaching. Having grit doesn't mean you're infallible, that you have everything figured out, instead it means that when you get bumped, you don't let it deter you. That you continuously rise up to the challenges placed in your path. 

What I love about grit, is this concept that we can all be great. We can be gritty with our jobs, with our dreams and our daily lives, and for me it's especially true for cancer. It's about being passionate, about educating yourself, learning from your mistakes and evolving. It's connecting and absolutely never giving up - even when you're beaten, and exhausted, sad or scared. 

I like to think I have grit, but lately I had lost touch with Her. I learned tonight that even if you feel lost, grit can not escape you. That we all need coaching, support, and unconditional love, in order to truly be our greatest selves.

I think it's impossible to be your best self without learning from others. I have learned grit from all of you. You've helped support me in all ways, and that is why I am still here, why I've been successful thus far. It's easier to get back up when you have a hundred people reaching their hands down to you.

Today, as I drove to the gym, I started sobbing. I sat in my car for a few minutes, pulled myself together, then went in and worked out. Then I walked back to my car and before my door was even shut, I started sobbing again. I was embassed that it even happened, frustrated that I was still this emotional about everything. Then, tonight, while I was listening to Coach, and Angela, I realized that grit is in the every day. Grit is determination, and heart, along with effort, and perseverance. And, today, although sad, I refused to be defeated. So I guess Grit never left me, I just needed to pay attention to her.

Angela Lee Duckworth has written the book Grit, and also has a fabulous Ted Talk that you can watch here:

Tuesday, May 17, 2016

UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don't know if I could stomach a fourth surgery, but before I can commit to that anyway, I've requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation.

It's confusing to hear conflicting results from two different centers, but that's nothing new for me. At this point, I'm waiting for insurance to approve the scan. Next, we'll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek.

As always, I'll keep you abreast. (That word always makes me laugh, so I had to throw it in there.)

PS It's my brother's birthday today, so if you see him, please don't say anything until tomorrow! xo

Friday, May 6, 2016

Guest Blog Series - Anonymous

It's the first Friday of the month, and that means GUEST BLOGGER! I am loving reading other people's perspectives, their feelings, their experiences with their cancer and how it effects their daily life. When I received this article, I immediately started reading it aloud to Dan. We were both floored by her candidness, and her ability to get us chuckling in one minute, then nodding our heads in agreement, then cringing. Her writing is organic and true, and I love it. I'm very grateful to Anonymous and Lone Wolf for participating in the Guest Blog Series. 

Jess, the guest column idea looks like a good one. I was completely absorbed by Lone Wolf’s description of her experiences, partly because she writes well but mostly because she writes well about shared experiences. 

Take the “tell your friends or not” issue. When I was diagnosed, I wanted to keep a low profile but it seemed to be hard for my family and against the advice I was getting from the experts. “Let your friends in,” one writer urged. “Keeping a serious illness under wraps is like trying to keep a beach ball underwater,” another noted. True enough.

I ended up writing about my diagnosis and sending installments via email. Of course, once you start that, everybody knows – and they want to know more. Human nature is well-intentioned but it didn’t take me long to cringe at the eventually predictable conversations. Me: “Hey, how’re you doing?” Friend, “No the question is how are YOU doing?” There’s a certain look in the eye. It sets me apart. It makes me feel somehow targeted whether I feel like talking or not. Even whether I know who’s asking or not. Word gets around. Cancer is interesting. A grocery clerk at a local store invariably approaches me when I come in to ask how I’m doing. I have no idea who she is but I know the look and the sound of the voice. The cancer survivor has entered the store. (One of my sort-of friends announced at Market Place in a loud voice, “She’s a cancer survivor.” What gets into these people?) 

I’m doing very well right now but this has been an ordeal. Chemotherapy and radiation are not fun and all of us who go through the treatments know the peculiar fear. What is this stuff doing to me? After-effects aren’t pleasant either, but all of it has been manageable and I feel good about life in general, that is until I get into another conversation with one of our relatives who likes to tell me, “I would never put that poison in my body.” 

So far I am unfairly attacking my poor well-meaning friends/family but unfortunately there is no perfect formula for talking about cancer so I can’t adequately advise people when I would just like them to shut up. Just let me go back to being normal and benign. Try to forget everything I’ve told you. 

I have always been a hypochondriac but I am now beyond belief. Remember Veda in “My Girl?” She was so afflicted that she thought she had prostate cancer. I am just about that bad. Currently I’m certain that I have breast cancer, tongue cancer, and brain cancer but I have not (yet) seen an oncologist about any of these. “Riddled” with cancer as I’ve heard it said. I am tempted to go hunting for symptoms but the Internet is a terrible place to look for information. If you look for fatalities caused by hang nails and acne, you will find them. 

Then, too, sometimes the people who should know better, do not. I went to see a specialist in Bellingham about two weeks into this “journey” (“journey” is as popular as “survivor”) without realizing that she is a heartless witch. I asked for three things, a clear diagnosis, the options for treatment, and some hope. I got the first two but the third wasn’t in her repertoire. Instead of hope she gave me the odds – the odds against survival beyond a couple of years, the odds in favor of recurrence, the odds in favor of the grim reaper coming to call. I was stunned into silence – a rarity for me. 

So…here I am, feeling good, feeling smarter, loving my family and some of my friends more than ever, looking forward to summer, and gaining inspiration from others. Some of them are celebrities. Joan Lunden appeared bald on the covers of magazines, Angelina Jolie has undertaken extremely brave measures to assess in advance any cancer that might be genetically ready to pounce, and Jennifer Griffin, a tv news analyst, diagnosed in 2009, has conquered triple negative breast cancer. These women and many others keep my optimism intact. True for my admiration for Jess too although she resists the pedestal. 

Jennifer Griffin said this: “The problem is we all think we will live forever. Cancer stops you in your tracks and makes you think about how you want to live your life.” And that’s the truth. 


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