Thursday, September 27, 2012

Four Myths about Chemo

I am at the halfway point of my chemo cycle. Two weeks from last one and two weeks til next one -- time flies when you're having drugs infused into you. 

No, that's not me... see Myth #4
The two-week mark is also when they take blood and vitals and see how you're tolerating chemo. (For my blood draw today, I had the same lab tech that I've had before and he may be one of the all-time best blood drawers. Seriously. Having found my vein earlier, he basically picked up the needle from his table and stuck me with one fast fluid motion. If phlebotomy had a nightly recap show, this would have made the highlight reel.  But I digress.) 

So how am I tolerating chemo? The short answer is: well. My vitals are all normal and my blood counts are all stable/steady/normal. But I didn't really need any check-up to tell me that.  I feel fine - energetic, healthy, alert. I feel like myself and have pretty much since about last Friday/Saturday - one full week after the chemo ended. 

I met with Nadia, Dr. LaCasce's nurse practitioner and did the usual doctor things, including feeling my lymph nodes, including the one that started this whole thing. I forgot to mention to her, but that one node -- the one that I've always been able to feel with my fingers seems to be definitely smaller, which is what we want to happen. I also asked Nadia some questions about chemo side effects and lifestyle limitations -- and between her answers and what Dr. L already told me, I'm ready to dispel a few myths (or at least over generalizations) about chemotherapy. 

Myth #1:  Chemo gets worse over time
For some treatment regimens this is true. And for some people undergoing the same 4-6 cycle treatment that I'm doing, there may be mean progressively more pronounced side effects -- both in duration and in severity. However, many patients who tolerate the first cycle well (as I did) will continue to tolerate all the cycles well. Many times the progressive side effects are in patients who aren't in such good health as I am. (I've never been told more times how healthy I am than I have since I've been diagnosed with cancer. Go figure.) I'm still bracing for tough first weeks but am optimistic that I can contain it to that.

Myth #2:  Chemo means you have to take it easy 
False. You have to listen to your body, but that doesn't mean you spend the whole treatment time on the couch. In fact, exercise has been shown to help both physically and mentally during treatment. I'm not planning on running any half-marathons, but as long as I don't succumb to man-up mentality, I'll be fine. I'll rest when my body says rest; I'll be active when my body says it's okay.

Myth #3: Avoid crowds, kids, and public restrooms 
Nope. Not necessary. Only stem-cell transplant patients have strict immune system protection safeguards to follow. As Nadia said, I wouldn't put myself in a room full of sick people, but there are no other immune system precautions. One side effect is a possible drop in white blood cells, which often responds well to a booster shot (forgot what that was called, something like imboost or some other clever pharma marketing name) but otherwise, only avoid crowds if you're agoraphobic, kids if you want peace and quiet, and public restrooms if you're fresh out of hand sanitizers.

Myth #4: All your hair falls out
Although this does happen in many cases, it's not always the case. And it's certainly not happening to me, which means any comments about apparent hair loss should be duly attributed to genetics and aging, not chemo.

I'm not trying to make light of chemo. It involves some serious pharmaceuticals that can knock people on their ass. But cancer is a disease of more than 400 different types; and among those 400 types, there are sub-types; and among those sub-types there are different stages of disease; and for each of these there are often different courses of therapy, including different variations of chemotherapy. And then those different variations of chemotherapy are applied to people who fall on vastly different points of the healthiness spectrum. It makes generalization problematic. 

Sunday, September 23, 2012

Man Up

We're screwed up. 

Men, that is. Faced with overwhelming evidence from our brain, our body, every piece of literature, our friends, our family... from everyone, that we need help, our general response is. 
"Nah, I got it. I'm fine. I'm good."

Meanwhile internally, we duck our head and turn our shoulder to the bitter cold that this radical self-sufficiency brings and we say to ourselves that we can tough it out. It's hard. But we can be harder. 
We go to work when we should stay home. We insist on moving a desk, or a couch, or a refrigerator by ourselves. We stay in the game when we should get out. We get lost. 

And we take some perverse pride in it.  As if toughness is the measure of greatness.
Maybe it's not all men. Maybe it's not just men. Maybe it's just athletes. I don't know. But I've played sports, watched sports, watched sports movies, coached sports, read about sports, talked sports, wrote about sports... you get the idea. I've never heard these lines: "Wow! I really admire him for sitting this one out."

Which is not to say that I think every time someone gets a bruise, they should head for the sidelines, literally or metaphorically. But from an early age, in boys and men particularly, we celebrate a culture of toughness and stoicism -- particularly in sports -- that becomes a part of how we define and evaluate our worth. You got hit by a baseball? Shake it off. Got a knock on your knee? Walk it off. Here, rub some dirt on it. In the face of adversity, illness, difficulties, we soldier on. 

We man up. 

The cancer world is full of battle imagery. I've said that in this space before. But I never really got why some people objected to it. I get it now.

Not because this past week has been such a struggle. There were a few mildly difficult days that, if I had listened, would have been easier. No, I get it because the whole battle, fight, be strong language, if interpreted the wrong way, can end up reinforcing the whole man-up culture. It can be read that fighting, being strong is the only acceptable response. 

It's not an either-or situation, of course. There are times when fighting through is the right course. But there are also times when it's okay to sit one out. To take a break. To listen to your body. And it won't make us any lesser for it.

As the second post-chemo week continues, I'm happy to report that I'm feeling pretty much back to my self. But I'm also aware that week one will continue to be tough (perhaps even more so as we move forward through the 4-6 cycles). Next time, though, I might be a little less tough.

Wednesday, September 19, 2012

Recovery through a (limited) Social Media Barometer

At the beginning of the week, I had grand plans to use social media to track the week. But as the week wore on, that shifted a bit. It went something like this:

Thursday, Day 1 - Okay, first day of treatment. I should tweet about it or something.

Friday, Day 2 - This isn't so bad. Short treatment day. How about a FB post with a picture? There. Coffee in hand. Perfect.

Saturday, Day 3 - Quick. Get a blog post up while I still have the energy.

Sunday, Day 4 - Hard to post while horizontal.

Monday, Day 5 - I should write something. Or maybe change my Facebook status . Or Tweet. Nah. Maybe I'll just take a nap..

Tuesday, Day 6 - Hmmm, this post I started the other day sort of works.

Wednesday, Day 7 - Okay, new post.  New FB status completely unrelated to chemo.

Let week two begin.

I'm feeling somewhat better today. The mornings are still filled with a little nausea (pretty sure I'm not pregnant) but as long as I remember to eat, I actually feel better. That sounds odd, I realize but that's the way it's been working. I'm hoping to have a mostly full day in the office tomorrow.  My team and colleagues at work have been great keeping things on track so that I can rest some and work at home. I can't imagine getting through this week if I had to be in the office the whole time.

Thanks everyone for their words of support!


Tuesday, September 18, 2012

On the Road to Normal

I'm writing. And that's a good thing. 24 hours ago, this would have been too much effort. But now, the sheer fact that I can string a coherent (you be the judge) sentence together is a good sign that the fog is lifting and I'm on the road to normal. But I have to admit that it's been a little tougher than I thought it would be.

Not the chemo. That was actually easy. Thursday was a long day but I had plenty of emails, texts and such to occupy me. Friday was a short day and I wasn't feeling any effects yet. Saturday morning was a normal day at the soccer fields, but by about 3 pm, I was starting to feel wiped. Sunday -- three days from the first day of chemo -- was probably the worst day.  

The anti-nausea pills do a good job of controlling that side effect, but there's little to be done for the general fog that surrounds you. It's hard to describe except in cliches and metaphors but it feels like you're perceiving the world through dirty glasses - nothing is sharply in focus. 

Somewhere around 3 or 4 pm on Monday  afternoon, I could feel things starting to improve a bit and although I definitely felt a bit fatigued, I felt sharper and able to function. So much that I thought I'd head into the office on Tuesday. The commute made for a tough morning. By this evening I rebounded again, but you get the idea -- it's been an up and down few days and although I'm feeling optimistic that the worst of the side effects are behind me, I'm taking it a bit more cautiously and will try to work at home tomorrow for as much as my energy allows.

I'll post more thoughts, hopefully later in the week. For now, I can only say that this is a learning experience. My first instinct is always to fight through something -- maybe it's the runner in me (if I stopped running every time I had an ache and pain, I'd never finish a race) -- but with chemo -- with  5 more cycles of this -- I need to learn the lay of the land, and to know when to take it easy. It is a marathon, after all, not a sprint. 

Friday, September 14, 2012

Round 1, Day 2

"Louie and Phil's optimism, and Mac's hopelessness, were becoming self-fulfilling"

Starbucks? Check. Ready to go.
I just read that quote from Laura Hillenbrand's Unbroken, (thanks, Dad)  today. This afternoon as I was recovering from two days of chemo. As I said the other day, it's interesting how words and phrases present themselves when you're most ready to, or in need of, seeing them. It's not that I needed to see that quote, but it resonates with a lot of what I've read and written. So with that, a quick summary of day two.

A very easy day, after pre-meds and then Bendamustine, I was done in two hours. And while I'm still a little light-headed, it's not even close to debilitating or even activity altering. I'm going to take it easy tomorrow, but if I'm up for it, hope to do an easy run on Sunday. (Did you hear that Greg B?)

I've had more fruits and veggies today than I don't know when, thanks to a day that started with a fruit cup from the Dana-Farber Dining Pavilion, followed by a salad and tomato/mozzarella panini at Panera for lunch, and then snacks from a very fruity edible arrangement (thanks Amy and Tom!), and tasty drinks from our new acquisition (see below).

Anyone for a tomato, cucumber, celery,
and serrano pepper juice? Not bad. Next time,
more tomatoes, less cukes, more pepper

I continue on the anti-nausea for another two days. By Monday, nausea shouldn't be an issue (and it isn't now thanks to the anti-nausea drugs) but the effects of the steroids may wear off making be a little tired. We'll see. So far, so good, and I remain optimistic that the rest of the between chemo cycles will continue to go well. Then back to Dana-Farber on October 11 and I'll take more pictures. (Well, I'll be back to Dana-Farber on Monday, but just to work.)

All the well wishes, the emails, the texts, the facebook comments, messages, phone calls, owl notes, and all the positive energy helped more than you can imagine. Thank you all (and particularly Stacy!!)

I'd also be remiss if I didn't brag about the great care that Dana-Farber provides. I heard patients telling stories about their care teams all the time, and I got it. But until you get it, you don't get it. From the vitals nurses, to the assistants to the primary nurse (Sara - you're the best)  to the parking valets, the volunteers, the cashiers in the dining pavilion, the pharmacists, the blood draw nurses, the CT techs, the schedulers -- you name it. All friendly, personal, smiling. I didn't chose Dana-Farber; it choose me. But if I were to have chosen it, it wouldn't have been for the friendliness of the clinical staff; it would have been for their special expertise and ability to FIX THIS. That everyone is also so calm, friendly, patient and understanding turns out to be as important in the end as the skill -- in fact, it's actually a skill in itself.


Thursday, September 13, 2012

Day One in the Bag

Or actually, it's not in the bag, it's out of the bag, as in nothing left to drip.

All in all a good day, but a long day. After early blood work and a visit with Dr. LaCasce and then a trip downstairs to get the anti-nausea drugs, we started chemo around 10:40 and wrapped about 6:00. It went saline, then  pre-meds for Bendemustine (some anti-nausea pills).

Then we did pre-meds for Rituxan (which I believe was a Benadryl drip and some tylenol and steroids in pilla), Anyway, no allergic reaction to the Rituxan and the main effect was a dizzy, kind-of vertigo, kind of restless feeling in arms and legs, due we think to the Benadryl. An ativan helped that quickly.

Right now, I'm just a little on the light-headed side but as functional today as I was yesterday. The nausea may surface over the next few days, but I've got some magic pills to hopefully keep it at bay.

Day two will be much shorter, and hopefully will include a nap ;)

Stacy and I had competing iPads. At one point, we both have been using both phones (for texting) and iPads at the same time!

Super shout-out to Cynthia again for making Princess Bride watchable. Not only did it pass the time and let me watch it close up on my shiny iPad, but it also passed time as I got into a line-posting thread on FB. Inconceivable.


A view inside the Healing Garden on the third floor of DFCI'S Yawkey Center.
Utterly quiet except for the sound of birds chirping -- on  a CD, but still, very cool space
with plants that change seasonally, and where I finished yesterday's blog post. 

A Letter from a Patient

You've probably figured out by now that I'm not a good patient. I'm not a good non-patient, but as we cross the uncrossable divide from doctor's visits to chemo, well, my not goodness will become even more obvious. 

I appreciate your support. I mean that not as a token thanks that is tacked on to an email reply, but with all my emotional sincerity. I appreciate the emails, Facebook posts, Twitter mentions and first-, second- and third-hand offers of positive energy, prayers and good thoughts. When I check my email and see another friend checking in to send their good vibes my way, I smile inside. It helps me. I don't know how, but I know it helps.

But I'm a guy. That means it's my job to fix things, to make them better, to take care of things. It's my job to be strong, to man up and tough it out. It's my job to solider on when I'm tired, or anxious, or -- and because I'm a guy, I'm not even supposed to write this, when I'm scared. I'll  tell my doctor my symptoms and expect her to help alleviate them. To you, I'll just note my symptoms as an odd curiosity - as another opportunity to earn my look-what-I'm-enduring badge. And above all else, I'll never ask for help. In fact, I'll likely shun it when it's offered. Because I'm a guy. Or more accurately, I'm an idiot.

Sometimes, I need to be reminded of that. I need to be told, "You're an idiot. You need support."
Look, I'm here to say that the physical part of being a patient has been easy -- and let's hope it stays that way. The rest of it is sometimes beyond challenging. My mind works in ways that I understand, but am often unable to change. I wrote months ago about optimism and hope, and how that's my equilibrium, the place where my mind wants to go. When I find myself being weighed down with negativity or anxiety, my mind goes into overdrive, doing  everything in its power to right the ship.

The alternative is we capsize. 

But when wave after wave of emotion  -- anger, frustration, powerlessness, sadness -- crashes into me, it's hard to keep the ship afloat. Often, the way I deal with it is to overnormalize things. Ignore or repress reality and find the normal; find my happy status quo. Today, I woke up, showered, drove to the station, got my coffee from the same place I always do, said hi to my commuter friends and found my seat on my normal train. 

The only difference is: it's not a normal work day. I'm going to chemo.

I started writing this blog with the simple goal of getting thoughts out of my mind. It was a natural reaction for me and the writing has helped a lot. But about 6 months ago, I turned it from private to public, which in itself didn't do anything, until I started sharing my posts on Facebook and Twitter,

Why? Why did I do that? The easy answer is that I thought it might help others who ran into these thoughts. Maybe. But I think sharing is a call for support - and support is a two-way street. It's a contract where supporters offer help and the supportee accepts it. For some of us   -- for me -- that's a lot harder than it should be.

Thank you for your support -- from the little things to the big. As I enter the next phase of this long cancer journey, I hope to be as good at accepting your support, as you are in offering it. 


Monday, September 10, 2012

Getting Ready

It's been a full week, I think, since my last post. Sorry for the delay, but I was traveling for work last week and instead of blogging, was doing a fair amount of tweeting (see the feed at right!) and that didn't leave much time for the TOL.

Another, perhaps more significant reason is that I've been in a fairly status quo state of mind. As my first day of treatment approaches, I find myself, to be honest, oddly looking forward to it.  That wasn't always the case. In the weeks following the decision to treat, I've wavered between feelings of "Oh, my god, I'm getting chemo!" to "I have a trip to the doctor coming up."

I've contemplated the possibilities and the potential complications -- side effects, allergic reactions, the chance that the drugs don't do the trick -- but I've tried to move those to mental off-site storage. I'll recall them if I need them later. By releasing the worry, I can allow my mind to fill the free space with more positive thoughts -- like the the notion of putting this into a nice, long remission.

Part of my mental readiness I think is due to the fact that I feel good.  I had a physical with my primary care doctor last Friday and all systems check out. Went for a speed workout this weekend and fared well. And i continue to feel symptom free-- in fact, the one lymph node that's been most palpable even feels like its receded a bit, perhaps in fear of the upcoming treatment.

Am I being overly optimistic and unrealistic? Who knows? But with three days until treatment begins, I'm ready to get it going. Ive got my Netflix queue lined up with movies  (although I'm disappointed in their lack of selection for the on demand movies. No Princess Bride?! What?!) and am prepared for a long but quiet day on Yawkey 8 (that's Dana-Farber speak for the 8th floor of the Yawkey Center for Cancer Care).

Thanks to everyone for their support (and movie suggestions both on and offline). 


And in case you are unfamiliar with The Princess Bride, here's the trailer

Monday, September 3, 2012

Good-bye Summer

It's Labor Day and that means the end of summer. It's been a busy summer, with nephews and nieces graduating, and trips to family parties, vacations, and now the beginning of school. I was looking at pictures of the boys from the past couple of months. I really like photos so much more than videos. With photos you're able to capture that split second of the moment, an instant of happiness free from the surrounding context which might be less blissful. Looking at the pictures of the boys -- at their innocent joy -- reminds me of those almost imperceptible moments of bliss, of how much I love my family and how lucky I am. And, in a way, prepares me for the next phase of my cancer journey: treatment.

Infusion (aka, chemo) begins 9/13. I've got a business trip happening between now and then, and in my mind, I've had these events (Labor Day weekend, business trip) standing happily between me and treatment, preventing me from spending too much time thinking about what might be. As we know, there's no real good that can happen by worrying about what will happen during treatment, but that knowledge doesn't always prevent my mind from going there. And the questions I have range from mild curiosity (If you're being infused for 8-10 hours, what happens when you need to go to the bathroom? Do you disconnect? Drag a pole with you? It's a bit silly, but I'm wondering about it. And more importantly, can I type on my iPad during the time I'm there? Is there an outlet nearby to keep it charged?) to more pressing concerns.

I vacillate between thinking that my treatment will be nothing more than two days spent on Yawkey 8 each month, to worrying that I will be too tired to run, to coach soccer, or do anything but play Rock Band with the boys. Most of the blogs I read are from people who have had a rougher road to travel than I have, with different diagnoses than I have, but reading of their battles with chemo and other treatments does make me pause for a moment.

But whatever will happen will happen. And I will deal with it at the time, not through the use of any great wisdom or strength, because it's what you do when life happens. My friend Cynthia sent a great quote from Anna Quindlen, from her book, Lots of Candles, Plenty of Cake, that sums it up here:

"Most of us don't have tornadoes in our lives.  Our disasters are manageable and predictable, the losses systematic and expected.  The car conks out, a younger man is promoted in our stead, our incomes shrink, the heart goes haywire.  Our grandparents die, then our mothers and fathers, then some of our friends.  People manage to rebound from great devastation;  we read about them every day, the parents who survive the death of a child (though we know we couldn't), the workers who lose lifelong jobs (a turn of affairs we're certain we wouldn't survive), the patients whose bodies are racked by terrible disease (which we wouldn't want to live with).  And then sometimes we become one of those people and are amazed, not by our own strength but by that indomitable ability to slog through adversity, which looks like strength from the outside and just feels like every day when it's happening to you."


Hope your summer was as great as mine was.

p.s. Movie ideas needed. If you've got any ideas for good movies to load up on my iPad, leave a comment here!