Turn the Calendar, Hold the Chemo please.

I'm looking forward to Thursday.

Mostly because Thursday will mark the first time in more than half a year when four weeks will pass without heading into the comfy confines of Yawkey 8 Infusion. It will be more than four weeks since I had a needle gently coaxed into my vein and taped in place; more than four weeks since I've taken my steroidal, anti-nausea, anti-allergy cocktail; more than four weeks since watching drugs drip into my vein while I surfed around on my iPad; more than four weeks since I've braced for, and managed  through the side effects.

The fact that Thursday is the last day of February only adds to the celebration.

Of course, the following week I'll have a needle jabbed into me again as I go in for blood work and scans. But that's fine. I remain cautiously optimistic about the scans, and about some of the recent data coming out in relation to follicular lymphoma, like a study a fellow follicular lymphoma blogger writes about. The short summary is that a study of B-R (that's Bendamustine and Rituxan) effectiveness in previously untreated follicular patients showed a median progression free survival of 69.5 months.  That's an average of nearly seven years. And I like to think of myself as above average.

But we know follicular lymphoma always returns, which is why stories about Rituxan's success on treating relapse is encouraging. So too is news about a new drug, called ibrutinib that Lympho Bob also writes about.  This goes onto my list of questions to ask Dr. L, and for things to look for at the Lymphoma conference I'll be attending in late March.

I'm looking forward to the conference; I missed it last year because of kids' commitments -- or at least that's the reason on record. The reality is, I wasn't ready for it last year. I didn't know that then, but I do now. It's part of my cancer evolution, and it continues to surprise me.

When I was first diagnosed, I did a couple of things in quick succession: I started to blog and I left Dana-Farber. The blog was only for my friends and family - to help them as much as it was to help me, by allowing them to check in on me without having to intrude. I didn't expect to make the blog public; nor did I expect to return to Dana-Farber, except for my quarterly visits.

Five months later and I was back at Dana-Farber full time. Shortly thereafter I opened the blog up.  And over the past year or so, I think I've opened up myself -- finding that balance of letting my cancer become part of who I am without taking over my life. Cancer patient now joins a growing list of defining characteristics. I'm still a husband. A father. A son. A brother. A soccer coach. A runner. An editor. A writer. And many other things.

I've gone from letting cancer subsume my identity, to avoiding cancer wherever I could, to my more balanced existence today. The pendulum swings; the evolution continues.

These past few weeks, it feels like I'm moving into another phase, not just because of the end of treatment, but also through my new connections to other bloggers and fl survivors. I feel an odd but deeper sense of belonging, which may explain why I'm looking forward to the lymphoma conference.

Almost as much as I'm looking forward to Thursday.

Forks Over Knives

Note: After I posted this, The NY Times just published this interesting piece about the Mediterranean Diet, which quotes one of the main docs in Forks Over Knives.

We watched an interesting documentary last night called Forks Over Knives. It builds a convincing (if mostly one-sided) argument for the benefits of eating a wholly or, at least mostly plant-based diet that excludes or minimizes animal protein, dairy products, and processed food.

This isn't new. Vegan and other diets have been around for years, but this documentary follows two doctors who have preached this diet based on the scientific evidence they've seen that links the typical Western diet to not only obesity, but also diabetes, heart disease, and yes, cancer. One of the people interviewed is a woman marathoner who had metastatic beast cancer which she treated by changing her diet. She's now in her 70s and doing triathlons.

While weight-loss fads come and go -- grapefruit diets, cabbage diets, Atkins Diets, South Beach Diets -- the idea of the whole foods, plant-based diet appeals to me because it's not focused on weight loss, but rather on changing your body, inside and out, by changing what you put in your body.

We've gone down this road before many years ago with a diet called the Sonoma Diet, which follows a Mediterranean diet - plenty of whole grains, vegetables, fruits, and no processed foods - but plenty of animal protein in it. Getting rid of the processed food felt great, but then came kids, and busy lives and before you knew it, we were nearly back to where we were before.

I don't think it's feasible for us to go full vegan (no meat, no fish, no dairy); and I'm not about to forgo my traditional treatment and put all my faith in dietary change. But I know it's possible to shift the balance so that meat and processed foods are the exception rather than the rule. It'll be more expensive and more time consuming (the whole idea behind processed foods, after all, is low cost, high convenience) but with planning and discipline, we can do it.

Just as soon as we use our Capital Grille gift certificate.

--Michael

p.s. - another interesting site is 100 Days of Real Food which focuses on eliminating processed foods but does include meat (in moderation) and dairy (not so moderate) in its plan.

The War on Chemo Side Effects

I know that I'm not fat.

I'm just getting that out there before you get the wrong impression. But I will say this: I've never in my life weighed more than I have at this point. For those of you who know me, I realize I'll get little sympathy from that. But this isn't about pity, or sympathy, or any derivative of that.

This is about control.

For the last six months, I've had the conflicting forces of chemo side effects and the knowledge of good cancer-fighting food habits. They've waged a little battle inside of me. Chemo side effects won. And in the process they made it hard for me to do the two things I know I could do to watch my weight: Exercise and Eat Healthy. Among the weapons used by chemo side effects were: :

1) Steroids. My monthly dose of steroids left me both easily angered (ask my kids about the Saturday following chemo... not always pretty) and hungry. Not for rabbit food, but for manly, meaty, fat-filled food.

2) Nausea. As the steroids ran out of steam, chemo sent in reinforcements in the form of mild, nausea. And this nausea was best defeated with a combination of anti-nausea pills, and, believe it or not, eating. Whether I was hungry or not, when I felt nauseous, or thought I might be feeling nauseous, or thought that I might soon be thinking that I might be feeling nauseous, I ate.

3) Crazing Cravings. It's not that I longed for pickles and ice cream but my taste buds changed in the week or two post-chemo. In the months leading up to treatment, I tried to follow the principles of Fighting Cancer with Your Fork (see the presentation below, if you're so inclined) including 5-10 servings of fruits and vegetables a day. But for about 2-3 weeks following chemo, fruit and vegetables just didn't appeal to me -- which made the Juicer a bit irrelevant, unfortunately. No, I needed crunchy, salty, fatty foods. I could have lived on Cheetos if I thought that was possible.

4) Water, Water. Although the week post-chemo left me often dry-mouthed and thirsty (and hoarse), water tasted, well, off. I needed it very cold to make it taste good and, on top of that, I was retaining the fluids from treatment, which made for nights interrupted with three trips to the bathroom. The net result of that was I didn't drink nearly as much water as I should have.

I've said before that a lot of the anxiety surrounding a cancer diagnosis is a lack of control. For the last six months, I willingly ceded control to chemo side effects. My inner dialogue was, "Just get through treatment, then you get back on track. Now go get some tortilla chips. You deserve it. Oh, and grab a cookie or two, while you're' there."

I'm two weeks post treatment today. It feels like months. I realize that we're still waiting for my March scans and I'm not out of the woods. But screw you side effects, I'm taking control now... even if I'm not quite ready to start juicing.

-michael

<iframe src="http://www.slideshare.net/slideshow/embed_code/12268911?rel=0" width="427" height="356" frameborder="0" marginwidth="0" marginheight="0" scrolling="no" style="border:1px solid #CCC;border-width:1px 1px 0;margin-bottom:5px" allowfullscreen webkitallowfullscreen mozallowfullscreen> </iframe> <div style="margin-bottom:5px"> <strong> <a href="http://www.slideshare.net/DanaFarber/fighting-cancer-with-your-fork" title="Fighting Cancer With Your Fork" target="_blank">Fighting Cancer With Your Fork</a> </strong> from <strong><a href="http://www.slideshare.net/DanaFarber" target="_blank">Dana-Farber Cancer Institute</a></strong> </div>

Something Fishy About This Weekend

There's nothing like a blizzard to take your mind off cancer.

The lead-up to the Blizzard of 2013 (aka, Nemo) filled us with anticipatory boredom as I worked from home Friday and watched the flakes fall. The after-effects of Nemo, on the other hand, left us with no power for 24 hours and piles of snow to be cleared.

Saturday was filled with neighborhood-ness. As often happens in the clean-up after storms such as these, it brought out the best in neighborly kindness - from snow clearing assistance to communal sledding, to a warming and coffee station from the one powered house on the street. As it got dark - outside and inside -- we made do - grilling out what we could for supper, reading and playing games by candle and flashlight, and bundling up under blankets and sleeping bags.

And then at 9:22 pm... power. And, eventually, heat.

The view from the living room, Saturday morning 

Sunday, then, brought a restoration of normalcy, along with more shoveling and visitors - those waiting for power to be restored. By 3 pm, I was beat. As we caught up with one friend (and a reader of this blog), she commented something to the effect of: "If my timing is right, you're about returning to normal this weekend."

I paused. She was right. This was my first full weekend post chemo, which always has some residue of fatigue and passing nausea. No wonder I was beat, with the combination of five or so hours of shoveling, not to mention trudging through three-foot snow drifts to a sledding hill, and the lingering side effects. The intensity of Nemo preparations and reparations had packed the last 48 hours with so much focus that it had seemed to stretch out the distance from my last chemo, and create a little mental separation as well. With the exception of some well wishes from a neighbor who had just learned of my status, cancer had been on the back burner all weekend (and, the back burner, as we know, didn't even have any electricity).

I'm not hoping for any more blizzards - or hurricanes, tornadoes or other major weather events for that matter -- but I think there's a good lesson in this. If one week out from chemo, I can push cancer out of my brain for the better part of a weekend, there's hope. Hope that, if my scans do confirm a transition back to watch-and-wait mode, I can live without being preoccupied with cancer and its inevitable return.

As I said as I entered round six, no one knows if the time to next treatment will be six months from now or six years... or longer. But this weekend gave me a taste of what a post-treatment world could be.

-michael

Uncomfortably Numb

The relationship between treatment and blogging has become somewhat predictable after six rounds. On Friday, I'm flying high and with the steroids overpowering the chemo, I'm eager to post, to write, to talk, to do something. Saturday, there's a balance and a veil of normalcy; I have energy but generally feel no need to post. And then comes the fog of Sunday and Monday. Cloudy. Jumbled. Unfocused. Words and letters form in my head, but it's as if they've been tossed in the air and fallen in a tangled pile of recognizable incoherence.  I don't know what to do with them. 

They sit there and occupy my mind in no productive manner, teasing at possible thoughts. I try to decipher their meaning but it really takes until Thursday -- until today -- before I can find a quiet space in my mind, before I can clear away the detritus, toss this mess of ideas into the air and reassemble them in some order. 

But that's not really what I wanted to write about. 

I want to talk about numbness.  

Inevitably, these days I'm surrounded by cancer. I work it and I live it. For the most part, I'm used to the daily encounters of creating cancer content -- I may have ran away from it at first, but I returned a year ago with a renewed purpose and voice. And to a great extent, I'm learning the new normal of life with cancer, even as I step into the uncharted waters of life post-treatment. 

No, what I'm sometimes overwhelmed with is the sheer routineness of yet another cancer anecdote. It seems like a day doesn't go by without learning of someone else I know who has been diagnosed. Somebody's uncle has pancreatic cancer. Someone's son was diagnosed with ALL. An old-friend's mother (or daughter) is being treated for breast cancer. Someone's husband has a brain tumor. 

A word cloud based on my blog feed,
courtesy of wordle.net 

I'm not trivializing the news -- far from it. But the volume of diagnosis among friends, family, acquaintances, friends of friends, or more far flung connections, is hard to process. Sometimes I think it'd be easier to list all the people I know who don't have cancer. 

On the one hand, I feel a certain kinship with these unknown strangers -- and  yet I also want to create a certain distance. To assert that their cancer is not my cancer.

At times I want to say: "enough is enough." There's no more room at the inn. This dreary little club has all the members it can take. 

--michael

  

Last Day of Chemo

Just a short post to say that in about 10 minutes I'll wrap up Round 6, Day 2 of chemo. That means no more chemo until the pesky lymphoma returns. Whether that's 1 month, 10 years or somewhere in between, who knows. But for now, we'll celebrate.