The man with no shoes
Thank you so much for all the positive thoughts, and for the compliments about my writing. (You do realize my recent problems all started because of my head swelling, right? /jk)
I am so glad that my sharing here might be helpful to others. For me, it has been a hugely cathartic and therapeutic process to keep writing about this experience. I’ve worried a little bit about becoming too self-absorbed, since it’s so focused on myself. Hearing that other people are benefiting from it helps alleviate that worry. Thank you.
I usually don’t really know or properly understand my own thoughts and feelings until I write them down.
The process doesn’t just document the state of my mind and heart, it is how I formulate and clarify and make real my ideas and feelings.
I’m so grateful for the positive feedback, it is incredibly gratifying to find that simply by being myself and sharing how I feel, other people are being helped. That is so awesome! I know from experience that a little encouragement or dose of positive energy can go a long way when the going is tough. For example, Chuck “chuckstrong” Pagano’s amazing speech about vision and circumstance pretty much got me through the first week or two after I first heard the word “tumor” in regards to my headaches. If I can somehow be that kind of help to other people, it would make me very happy.
Ok, on to the status update from our visit to MGH:
Today Shawna and I met with Norine Leahy (a nurse practitioner) for the first time, and also got almost a full hour alone with Dr Dietrich (my neuro oncologist), which was great.
We learned a lot, and came away more optimistic than ever. We learned that some of the details of our understanding about recurrence and radiation limits were not quite right. Happily, it seems my prognosis might be slightly less bleak than my post yesterday indicated.
* My age (extreme youth, from an oncologist’s perspective) is a HUGE factor in the likelihood that this initial treatment will succeed in eradicating what’s left of the cancer in my brain.
* Recurrence is not necessarily as much cause for extreme dread as it first seemed; recurrence often takes the form of small non-malignant growths that can pretty easily be removed with highly-focused radiation. The huge tumor I had grew there for at least a year, so it’s not like a recurrence would suddenly introduce another fist-sized mass.
* Lifetime limits on total radiation dosage are not absolute, so the best treatment options (the global consensus “standard of care” for GBMO, consisting of resection when feasible, then Temodar chemo + radiation) should all still be on the table if/when I’m faced with round 2 in the future, as long as a decent amount of time passes before a recurrence. Also, the super-focused radiation to target any specific little growths is always safely available.
* Some GBMO patients have gone as long as 9 years between initial diagnosis and recurrence.
* Dr Dietrich acknowledged there’s no cure, but then used the phrase “manageable disease” to describe my GBMO. That was music to my ears. With my awesome support team and doctors and determination not to let this thing beat me, I’m confident we can manage the hell out of it until it is curable.
Also, when it comes to terms like “incurable”, I have a lot to say. It was only a couple years ago that HIV was a guaranteed death sentence. Now, life expectancy for new cases is nearly the same as the general population. Things change quickly in cutting-edge medicine, and the advances in science’s understanding of cancer (e.g. the relative importance of genetic mutations) are moving so fast, that buying just a few years’ time between this treatment and a recurrence could easily make a huge difference in my long-term outlook. So instead of calling brain cancer “incurable” (which connotes a certain finality), I prefer to say it’s simply not *yet* been cured. I expect that to change, and to benefit when it does.
We learned that foods with highly concentrated sugar are basically poison for me, as they directly feed the cancer cells. Carbs are ok, but sweets are not. So, no more cookies or brownies or ice cream. Fortunately, while I’ve always enjoyed those things, I don’t have a huge sweet tooth. So this won’t be too hard for me. (I’m so grateful red wine and bread are still ok!!!)
Somehow I didn’t realize till today that I now have a titanium plate and screws in my head. I know my great friend JJ is jealous.
* Clinical Trials:
Massive thanks to Shawna and David for their tireless research, in compiling an exhaustive list of literally every single GBMO trial in the country for which I might be eligible. Seriously, you two are incredible. Nobody else has a wife or a brother like you. Following the wisdom of Dr Oh and Dr Dietrich, I won’t consider anything that *replaces* the standard of care, because there’s too much solid data showing its effectiveness, but trials that involve *adding* something potentially helpful to the mix are definitely worth considering. One problem with trials is that you can always randomly be put in the control group (e.g. get a placebo instead of the experimental medicine)… and in general they’re not likely to make a big difference. But, they do show where the research is going. Dr. Dietrich had a clever idea when he noticed that for one particular trial that looked worthwhile, the drug they’re adding to the standard of care is actually FDA-approved and available, with limited or beneficial side effects, and he could legitimately justify prescribing it to me on other grounds. If we decide to do that, it’d be like participating in the trial, but with guaranteed assignment to the test group that gets the drug. Pretty cool.
* Other medical detail:
This is probably way TMI, but FYI the catheter used during my surgery damaged my urethra. Ironically, I’ve actually had more pain and discomfort from that than from anything to do with the operation itself. But today, I finally got prescribed the right medication to help counteract symptoms in that area, and it seems to be working. Phew! Relief.
But it is insane for me to complain at all, about anything, right now. Here’s why:
Today I got a call from an old friend (I’ll call him ‘Tim’ to protect his privacy), and was sad to learn he’s been having marriage troubles. He told me he had been confiding in a mutual friend about his situation, when that friend said “wait, let me show you something” and showed him my journal entry from yesterday. Tim then mentioned a story about a barefoot traveller on a long journey who complains continually about having no shoes… until he meets a man with no feet. In Tim’s case, he felt like the man with no shoes after reading about my condition. But after today’s horrifying tragedy in Newtown, I feel like I’m the barefoot complainer.
When I learned about Newtown, it upset me so much I had to run to the bathroom, and was almost physically sick over it. It’s got to be the worst thing I’ve ever heard. I normally think hasty legislation in response to news events is a mistake leading to bad public policy, but all that rational thinking goes out the window now. This is too much. Something is just deeply, deeply wrong with this country when it comes to guns (and health care for the mentally ill), and it has to change. I’m so torn up about it, for those parents… it’s unimaginable.
In comparison, this evening, Shawna and I took the girls to Heritage Plantation (a beautiful set of museums and gardens in Sandwich on the Cape) for their “Festival of Lights”. We all bundled up in hats and gloves, walked around holding hands and looking at pretty Christmas lights, and got to look at antique cars, chat with Santa, ride an old-fashioned carousel, roast marshmallows over an open fire, sip hot chocolate (mulled cider for me) and watch the girls skip and run while they waved little glowstick toys I bought them. It was just perfect, a slice of heaven (so to speak). Thinking about those parents in CT, it was almost too much to take, how unfair it was that Shawna and I could spend this kind of idyllic family time with our gorgeous, happy, curious, brilliant, creative little girls. My heart just overflows with this massive, massive love for my family. Words fail me. I’m so lucky it’s ridiculous.
When I say I have a lot to be grateful for, I sure mean it.
Thanks as always for your love and support.
Originally posted on Caringbridge.org – 2012-12-15 1:58am