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

The One in Which I Talk About Being the Queen of the Iron Stomach

I do not throw up...

STOP! No, no, no!

Please, don't click to leave the screen! Don't you trust me by now to have a point when I say seemingly inappropriate things?? There's a point to all this, but you have to keep reading to find out.

As I as saying, I pride myself on having "an iron stomach". I don't know why. I have an extreme aversion to vomiting - and I'll use every bit of my will to stop it from happening, no matter how much I feel like I need to. I think I deserve a crown and a title for this, no?

The real one, I want made out of gold and precious stones, of course. This is just a rough idea of what it would like.

 In fact, I have only two real memories of throwing up - The first one is a kind of cute one actually.

Kiddies: Way back when, in the 60's, when I was a little tyke, there were no dvds, no digital t.v. recorder, and not even any VHS tapes! So, when you wanted to watch your favorite show, you had to wait until it was actually being broadcast on t.v. And if you missed you, you missed it. I know! Hard to believe!
 

Well, it was nearing Christmas time and my favorite, favorite, favorite Christmas special was on that night, "The Grinch Who Stole Christmas" (the original, obvi!)

I love that dog!

My mom had made my favorite dinner, lasagna (so, I might have overindulged in that?) but I remember the beginning of the show being introduced on our t.v. as I was dressed in a flannel nightgown and grabbed our huge, green throw pillow and plopped myself on the living room floor on my stomach and settled for the BEST show! Only within five minutes,without warning, I threw up all over that pillow! (Remember, t.v.'s could not be paused at that time!)  To her credit, my mom didn't seem upset as she cleaned me and everything up...in fact, I remember she giggled a little bit - seeing the humor in it all. She's still a sport! Thanks, Mom!

The second memory... involves shots of liquor and a good friend that held my hair back from the toilet. (Thanks, Allison!) But I really don't remember it. So, it doesn't count, right?

I hereby decree that I retain my title as Queen Iron Stomach! 

<Trumpets blare>

That's why when I began my post-surgery treatment for my GBM, my radiologist and oncologist prescribed two kinds of anti-nausea medications, I thought, I won't need these... (Reminder: my treatment was: 30 days of chemo (Temodar)- 7 days a week, and 30 sessions of radiation, concurrently, M-F) The radiation technicians always asked me how I was feeling, and they were amazed when I told them, no. I was fine. A little ginger tea and being careful what I ate was enough to combat the queasiness. I did have fatigue at times, but I listened to my body  - I napped pretty much every day, but tried to take walks - long or short pretty much daily. My doctors were very pleased with how well I was handling the treatments, too. Yay!

After my little rest from the initial treatment and my January MRI, I began the next step in my treatment: Temodar - 5 days on/23 days off as a cycle. Temodar is the same chemo that I took during the whole initial treatment, albeit in a smaller dose. It's a pill form that I take at home right before bedtime, so I (hopefully) sleep through the worst of the nausea. What nausea? Oh, that's right. They neglected to mention that I was going to have a MUCH larger dose of chemo now. In fact, after the ramping month in January, February and March's dosages are TWICE what I was going during radiation. ZOINKS!!! (Okay, I have brain cancer. They probably told me, but I just don't remember.) #freepass

In March (the first month of the new dosage), Day 1, 2, and 3 are okay...Ginger tea, ginger this, ginger that...okay. Day 4 March's cycle, I broke out that anti-nausea meds that they had prescribed way back when. I took it right before I went to bed. Who knows if it made a difference? By Day 5, I surrendered to my bed. I figured if I was able to fall asleep, my body needed rest  - and it had the added plus of making me unconscious to the very real, very intense nausea I was feeling. Day 6 (the day after my last chemo pill), I felt pretty much the same way, and then I slowly started to bounce back.

As I've just written about in my blog, I was in France almost the whole first two weeks of April, so they postponed the Temodar cycle by a little bit. Again, Day 1, 2, and 3, were okay. I was using the anti-nausea meds every night. I don't know if it was because I was jet lagged or that I was unable to really sustain my VERY healthy diet I have here, but this cycle kicked my ASS! I don't know if I should be allowed to retain my Queen of Iron Stomachs crown because I stayed in bed or on the sofa, buried in blankets for two days straight. I never threw up, though? The worst feeling is that you are so sick you can't eat anything and that makes you more sick...

STOP! No, no, no! 

"The worst feeling". Really? Really, June?!?!

Let me try to redeem myself from this lame statement above....
I've got a strategy to help me through my challenging times: 1) I try to learn from my mistakes. I try to keep track of what I've done and the results. Makes sense, no?
2) I delve into the standard practice of thinking about: "It could always be worse..."

When I first returned from France, I binge watched HBO's "Band of Brothers" because I was so interested after visiting Normandy. During the last couple days, I've watched "The Pacific", which the companion series about the American assault in the "Eastern Theater" during WWII. [Picture me with headphones and my ipad, wrapped a gazillion blankets.] In a strange, twisted way, it reminded me that I had better quit my whining - that what those guys went through...Let's just say that I'm not going to earn any medals of honor for feeling like I want to throw up a lot but not.
(But I'm keeping my imaginary crown!)

I also read a lot of blogs and webpages about other people who are living with cancer. And it's a guarantee that everyday, I read about someone who reminds me "It could be worse..."Like Valiant Vito, who (and his mom) inspire me every day.

What I'm facing is nothing compared to what they faced. There are some similarities, I would argue, though. We're all scared sometimes. And we all have to figure out how to keep our heads down and keep going. And the acceptance of the randomness of it all... Sometimes life is so damn random.

I didn't write this blog entry to have you all say, "Sorry, June, that you are going through a tough time." or "I'm sorry you're not feeling good." I'm not fishing for sympathy. Promise!

I try to make my blog about giving some window into the world of someone living with cancer. And if you are someone living with cancer, I hope you take away some feeling that you're not alone. We are just warriors trying to keep our heads down and keep going. We can do this!

And to make sure I retain my crown of course.