The One in Which I Talk About Continuing Chemo (Temodar)

Disclaimer: Use of Temodar will NOT result in this kick-ass blue color hair. 

I had so little experience with doctors and hospitals before my cancer. The only other hospitalizations I had were for the birth of my babies - and I only did that three times - not four - because we had Katherine at home with a midwife. (For real. Yes, on purpose. And it was my best birthing experience, FYI) But I'm not writing to open a can of worms about that subject...

I'm afraid I might be opening a can of worms on this other subject, but....what can I do? I'm just laying myself out there, speaking MY truth. Which is the whole point of this blog.

Every other experience I've ever had with a doctor - for myself or my children - I went in, I had an examination, the doctor diagnosed me, and he/she told me what to do. Whether it was prescribed medication or a humidifier or ice or the RICE diet...So, this whole GBM experience has thrown me for a loop. And caused some a shit-ton of serious anxiety.

I've followed the "Standard Course of Treatment" or the "Gold Standard" in the U.S. right now with treating a Grade IV glioblastoma multiforme. I was fortunate enough that my tumor was in an area that was operable, so the first step was resection. Then 6 weeks of radiation (5 days a week) and chemo, Temodar (7 days of week). This was followed by 6 months of Temodar, 5 days on and 23 days off. I also have something about the make-up of my tumor that supposed to make my cancer cells more responsive to the Temodar ... so, that's good, right? That 6th cycle was in the month of June...

and then...

About two months ago, I started hearing from my doctors that they were thinking of continuing the Temodar cycles another 6 months: cycles 7 - 12. (Wha'?!?!) My Neuro-oncologist said in a phone consult in June, that after the 6th cycle is a period of "negotiation". (I wondered what that meant exactly...) And when we met with her last Monday, she reiterated that it really was OUR choice if we wanted to continue with the treatments or move to a "wait and see" approach. I would still have my MRI's every other month - and there would be no medical intervention (surgery/chemo, clinical trial, etc) unless/until there was a change on the scan [i.e. a recurrence]. She was comfortable with "graduating" me from the Temodar cycles. [By the way, she said three of the four NO's at UCSF would recommend the continuation of the treatment. (It doesn't take a genius to figure out who the fourth doctor is, does it?)]

In the last two visits with my local oncologist, he characterized himself as "aggressive" and recommended the additional 6 months. (He works closely with the UCSF NO, so he already knew what her recommendation would be.)  The Temodar appears to be "working" - meaning, we're not seeing new growth. (note: We are not seeing shrinkage either.) But  - as I've said more than once in my blog -  with GBM, where growth is the norm (practically inevitable), and it's usually fast and furious, no growth is a good thing. And just so you know, if/when we stop the Temodar, we wouldn't go back to it if I showed signs of growth. They both said it makes no sense to "take a break".

I just wasn't expecting to have a decision so major plopped in our laps like that. It's required a lot of researching, talking, and reading, and crying...

I know there are people out there that opt for NO Western/Modern Medicine and opt for Alternative Options from the get go. Others trust only in the science of medicine and don't explore alternatives. For them, the decision would be easy. What has made it so very difficult is that I believe that I should take the best that "Western/Modern Medicine" has to offer, and do our damnedest to augment that with what we can as patients: the stuff we have control over.

I've made it clear from the beginning that I believe in an amalgam of both. I let the doctors tell me what is available - my "best options" with scientific evidence to back it up, while I use all my resources to do everything I can do to compliment that - and I believe it makes a difference. The focus on the whole person: the mind, the body, and the spirit. Nutrition, Fitness, Mindful Meditation, Yoga, Tapping into the positivity and love in me and the people around me...You've read it/heard it/seen it from me for the last nine months, This is nothing new.

And suddenly, the doctors are saying, "Yea...this whole modern medicine part...you're going to need to decide if you want to continue this another 6 months or not..." Wait...What?!?! Because, guess what! They don't have a fucking clue at what really works beyond this. Because there are no long-term studies and completed clinical trials regarding this issue.  I mean, there are some promising stuff coming down the pike, but they have no real academic, completed Phase III trials that say THIS is more effective than THAT. (Except Temodar/radiation treatments) Part of what's so complicated is that there are so many variables. There are ~120 different kinds of brain tumors, but let's just focus on GBM. Each patient has a unique set of circumstances - age, fitness level, where the tumor is, what the genetic makeup of the tumor is... I've read and read and read...I have to take breaks because it makes me want to cry. I can't avoid the numbers. I have to keep reminding myself that I'm not a number! Let's just say that it's a sucky situation and leave it at that.The good news is the numbers are getting slightly better. I'm still working on being the Outlier, though...

MAYBE the Temodar is the reason I have not shown growth at the tumor site. Or maybe it's one of the 100 things I do every day to help my body heal?  Or maybe it's a combination of things? Who knows? I can tell you who doesn't know: my doctors. ANY doctors. In the world.

Oh, if only he were really a doctor...but I digress....

This is some heavy shit. "Quality of Life' - there's a phrase that gets knocked around a lot with people with chronic/terminal illnesses.. It's a decision of: do the negative side effects of a treatment make life so miserable, it's not worth it?

Steven and I have spent hours talking about this decision, but in the end, he said, "I can't answer that question for you. I don't know what it's like..." I know we'll be revisiting this conversation again in the future. This is some intense, scary shit. If I think of it as a life-or-death decision, I just cry and am useless. So, let's not do that, k?

Right now, the "quality of life" question is a no-brainer. I decided to continue with the treatment. Yes, I am physically weaker, and when I stop taking the chemo, it will take some time to build up my strength again.  I researched the hell out of Temodar and current practice - and although it's all over the map  - there is a lot of precedence for continuing through 12 months - even longer, if it continues to be effective, and I am still coping well with toxicity (as measured by blood work - platelet counts, etc). But we'll deal with that when we come to it. The fact that I have no shrinkage WITH the Temodar makes me wonder if I didn't have any medical intervention at all...

Maybe this is TMI, but I'm willing to live through a couple of days per month in bed with: nausea, constipation, and extreme fatigue, if that means that I have more months with my family. It also requires that we are strategic about plans leading up to and just after any cycle. And when I told my oncologist about our trip to Disneyland and the accommodations and adjustments we made, I said, "We're learning all the time about how to live with cancer." He looked me sincerely in the eyes and said, "That's what your life is going to be like. Forever." 

There's a technical term for that. It's called: No Bullshit.

No guarantees, but I know that I will leave no stone unturned. And if/when Temodar stops working (Kiddos, sad to say that it seems to always stop working eventually), we'll have more difficult decisions than this because ...did I mention that the doctors can't tell us, "Just take two pills and call me in the morning." ?

That's what it means to have a terminal disease without a cure.

P.S. I noticed that I used the word "cry" a lot as I'm rereading this post. #cancercard #freepass

Paging Dr. Awesome McAwesomesauce (or How to not be a Dick)

Several of you have heard the back story about how I love my medical team...except for my neurologist...who was a Dick from the moment I met him. Allow me to elaborate...

Reminder: I had not seen Dr. Dick after my 1st seizure because the E.R. doctor and my general physician treated it like it was no big deal. Apparently that's common. 
1 seizure =  NBD, 2 seizures =  BD  <--- I sincerely hope that you never have to know this little formula. When I had my 2nd seizure, I was scared shitless that something is REALLY wrong with me.We made appointment right away with a neurologist.

Scene 1: Doctor's Office Examination Room
Dr. Dick (whisks his way into the examination room with both a laptop and an ipad): I'm going to be recording this, if you don't mind. Places ipad on examination table, already recording.
I didn't really mind, but now I wonder how he would have responded if I said "no, I'd rather this not be recorded."
Doctor: (looking at his notes on his laptop) So, explain to me in more detail about what brings you in here.
Me: (starts to explain the events since August 10th, the date of my first seizure)
Doctor: (cuts me off in the middle of practically every sentence while still not making eye contact with me. Waves his arm in front of of him like if he could just erase me from the picture, then this would all go so much smoother)

The one point that I remember him looking in my eyes was when he said:
Doctor: How much do you drink? And don't lie!

I can't even believe that this picture exists! So perfect!!!

Now, I don't know how much you know about me, but those that are close to me, know that this is what is called a "hot button" for me. Don't EVER accuse me of lying. I sometimes refer to myself as "pathologically honest". I hate surprise parties. I hadn't even entertained the idea of lying to the doctor about anything.  And what did I have to lie about? We own a winery. Yes, we drink wine -  nightly. I wrote on the freaking form we filled out before the appointment.

But it was out there, now. He thought I was a fucking alcoholic, and I'm having seizures because of "Alcohol Withdrawal Syndrome". What!?!?!

So, I googled that shit when I got home, and it didn't make sense. Yes, Steven and I are professional drinkers (errr. ...winery owners), but we had no problem anytime with going for days without alcohol. I never drank during the day - except for (hello!!!) Vegas. And certainly not on workdays!!! But 'cause I'm a type A personality, and I'm gonna do everything the doctors tell me to do - even the Dickish ones -  I stopped drinking. And guess what? I had another seizure two weeks later.  The E.R. doctor said, "hmmmm...That doesn't make much sense, does it?" Ya' think?!?!?!

Dr. Dick had looked up the most likely reason for my seizures and connected the dots. He really never listened to my story - because he kept cutting me off, plus he probably thought I was lying!!! And he came to the wrong conclusion.
Oh, to his credit, he did order an EEG and MRI (scheduled for 3 weeks away) because he saw something "vague" on my CAT scan film from my E.R. visit.  That's really the way he put it. "Something vague". Because the BEST way to deliver news like that is to be as ambiguous as possible. And by "BEST", I mean, the most "DICKISH" way.

Now, this is the time in the  story, kiddies, that some of you will be gnashing your teeth, and shouting "Sue his ass!" and other unflattering things. And I get that. But I have been assured by numerous respected doctors since then that 1) the tumor was so small and in such a hidden place that it wouldn't really be visible on a CAT scan (except as a really "vague" shadow, which he did see) and 2) Who the hell knows if another neurologist would have been more Johnny-on-the-Spot in this situation? And as far as I know, it's not illegal to be a DICK.

It's water under the bridge. I have other fish to fry. Big, Big Fish.
The real priority was getting another neurologist that I trusted. And so we come to the happy part of my story...Hey, I'm not promising you unicorns and rainbow, but this is good stuff.

Okay...ONE unicorn, but only because you said "please":

You're welcome.

 So, fast forward to my appointment Wednesday at UCSF. GAWD, it's hard to get an appointment with a neurologist! We met Dr. Awesome McAwesomesauce.  
note: I'll be referring to him as Dr. Awesomesauce from now on to save space. I will have to be careful to NOT refer to him that way to his face because it will be awkward for him.

Scene 2: Dr. Awesomesauce enters the examination room, shakes Steven & my hands and sits down.
Doctor: (looks me directly, earnestly in the eyes) I'm sorry that you are going through all this.
Me: (Trying not to cry in gratitude.) Thank you... <throat clenches up>

I know it is probably part of the training that medical staff get because I've heard this statement numerous times from my oncologist, radiologist, nurses, technicians...

I'm sorry that you are going through all this.

So,....WTF?!?! Was Dr. Dick sick for that lesson??? It's such a simple phrase but it means a lot.

Dr. McAwesomesauce went on to look me in the eye during the entire appointment  - unless he was showing us something on his computer.

Not actually Dr. McAwesomesauce. I'm pandering...

He showed us all kinds of cool pictures of the brain with cross-sections and stuff, and talked about where my seizures were most likely coming from and where my tumor cells are. And you know what he said?

Dr. McAwesomesauce: You could find this yourselves online. Just google that shit.

Okay, he didn't say "that shit". I added that. See! I cannot tell a lie.

Steven asked a million questions..which made him even cuter than when he shaved his head and became a Bald Hotty. Some questions, Dr. McAwesomesauce couldn't answer because...he is smart and competent and cool and everything, but unfortunately he doesn't have a crystal ball...or unicorns...or rainbows....

But he did say that I might actually be able to drive again! What???
My Audi A3...

My preciousssss........

You see, California law states that you can't drive if you have a seizure condition that affects your consciousness or impairs your right side (because it might interfere with the gas pedal/braking), but my seizures don't affect my consciousness and are very specifically localized on my left side of the face. Sometimes I even talk right through them - being careful of tongue, of course. And he would be very comfortable with writing me a letter to the DMV (when the time comes) stating that I am, indeed, perfectly capable of driving. Woot! And that, my friends, is better than any rainbow or unicorn.

There was some heavy news, too. I think I had already processed this, but Steven hadn't realized that I will (probably) have to deal with seizures for the rest of my life. The hope is that we can eventually wean me off of some of the medications, but that is likely to be a part of our new life.

But it's not the seizures that I'm focused on. It's the LIFE part of it.

So, I hope you have found this post helpful in some regard. Please pass it along to anyone that you know who is in training to be in the medical field.  Or have them skip to the Cliff Notes. I know how busy they are, memorizing bones and arteries and stuff.

Cliff Notes: "If you want to be a Dr. Awesome McAwesomesauce instead of a Dr. Dick"
1) Make eye contact with your patients.
2) Show empathy.
3) Listen...no, really LISTEN to what they are telling you.
4) Don't jump to conclusions.

Caveat - My brother pointed this out, and I think he's right. if you're House. I mean, brilliant beyond brilliant and always get the diagnosis right, then you have a FREE PASS to be a dick. The problem with this is that I think that an awfully lot of doctors imagine that they are House.
And they're not.

P.S. If you have any choice in what kind of doctor to be, the choice is simple:

I'm not going to be responsible for an argument about Who is the best Dr. Who, so I leave you with Tardis.