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