Wednesday, March 31, 2010

Enjoying "Life Out Loud" with Metastatic CRC Survivor Pat Steer

Pat Steer is a metastatic colon cancer survivor.  At time of her Stage IV diagnosis in 2004 her liver was shutting down.  Yet two weeks ago she was in Washington, DC with a group of colorectal cancer advocates for C3’s “Call-On Congress,” to advance the cause of a national screening and treatment program for colorectal cancer.
          On a daily basis, Pat fights fatigue, among other things. “I have to pace myself,” she says.  Due to a “miracle” surgery at Sloan Kettering in 2008 that encompassed both a liver resection and bladder reconstruction to cut out additional cancer, she now has a colostomy and deals with incontinence.   Yet as she tells me about this procedure and the number of specialists required to perform the operation she starts laughing.  “There I was with 300 stitches, drains everywhere and these two women come in and offer me a makeover! This was less than 48 hours after surgery and I’d just made it to a chair. The last thing I wanted was Clinique.”
          Equally as difficult as metastatic cancer for this incredibly intelligent woman are the neurological symptoms and cognitive issues resulting from a stroke in 2000.  She suffered smaller, additional strokes during treatment.  To distinguish between “chemo brain” or neurological impairments from the stroke might be anyone’s guess but I’ll bet you ten to one that Pat could explain the difference to you. “Many of the things I deal with stem from that [the stroke].  I have many creative adaptations that actually sound like good travel tips.  When I was going back and forth to Sloan Kettering for chemo, for example, the clothes I wear are washed, folded and packed back into a suitcase labeled, ‘New York.’ I have four alarm clocks.  I’m the consummate list maker.”  And travel back and forth she did, week after week. After her 2008 surgery,  she had chemo every two weeks for 15 treatments. What might sound surprising is that is wasn’t the side effects, but the routine itself that wore her out. “it got to me.  I started to feel like a mouse on a wheel,” she said. 
          Her strength and determination are evident talking by phone.  There’s absolutely no indication that any information processing is amiss.  In fact, Pat streams information, from one topic to another, with humor, and without pause.  If she’s tired, or has difficulty processing, you won’t know it by her writing or through conversation.  
         “You can’t triumph over the stats, and you can’t obsess about it,” she says. “But you have to understand the facts about your illness, too.  The fact is, we don’t do end of life-discussions well at all.  I think they should be incorporated into every survivors’ plan.  Because guess what?  For me the elevator has arrived.”
         She writes not one, but four different blogs, one of our benefits for frequent bouts with insomnia.  I’ve listed them below.  By all means, follow and learn from this marvelous woman. 

Q.   Your “Life Out Loud” blog is incredible.  How did you get started?

A.   I started online journaling after I was diagnosed in 2004, as a private blog that no one could read but me, sort of an experiment. I could write it on the computer so that I could read it. My handwriting was really deteriorating. After a couple entries at the end of 2004 that were private, I decided to make it a public blog. I didn't think anybody else read it but me until I started to get comments. I just kept at it, but I didn't keep a very regular schedule.  I wrote when I was in the mood. And suddenly I had archives, and subscribers and it was a blog.

 Q.  One of my favorite posts of yours was about cancer prevention.  Certainly in your case, and with most other YAC’s (young adults with cancer) – the usual prevention strategies are irrelevant.  Your cancer wasn’t genetic.  Somehow it seems to me we almost need at least four different types of prevention strategies – 1) for people who have no risk at all  2) those survivors with some cancer in their family and 3) those of us who have had cancer and 4) a case like yours – a ‘out of the blue’ cancer.  The question becomes, what can be done (both from a medical, and personal standpoint) to keep your disease where it is?

A.    As a stage IV survivor that question becomes even trickier.  So much of keeping my disease stable or staying  NED (no evidence of disease) is uncharted. There aren’t any answers for us. I think things like exercise, yoga, meditation, or reiki treatments can help make me feel better and manage stress better.  I do all of those things to the extent I can.  The information about diet is contradictory.  You do what you can to avoid progression or a recurrence, but the implication is that if you deviate from the current 'conventional wisdom,’ any recurrence or progression is somehow the patient's fault!  And it's just not.  Nutritional science isn't that definitive yet.  I try to eat low carb, get in around 80g of protein and at least 80g of fat in.  I stay away from sugar and artificial sweeteners and partially hydrogenated oils. But I also have to balance this with, “Listen, I’m already Stage IV!  I have this once-in-a-lifetime chance to eat coffee truffles or foie gras ‘ - am I really gonna turn this down because it's bad for me? My answer is, ‘hell no - bring it on!’ ” Cancer or not, you end up dying of something and in my case, it's not going to be from lack of enjoyment of life.

Q.  What’s the status of your cancer now?

A.   As of this minute, 21 March 2010, I'm NED and in remission. But I have a scan before Easter, and a checkup the Monday after. Ask me then.  Cancer patients status themselves from scan to scan.  We live in four-month chunks.

Q.  What has surprised you about having metastatic illness?  How can we -- the cancer survivorship community – better help our friends with metastatic disease?

A.  I think the single biggest thing is that people around me don't understand what it's like to confront life with a finite timestamp, or what some call an 'expiration date.' We talk sometimes about young people thinking that they're invincible, but I get the same thing from people older than I am. People always ask, "But, you're ok, right?" and I usually answer that with, “I am OK today. My disease is not gone, just under control.” And the other thing I deal with daily is that I wasn't ever expected to live this long.  So in some ways there's no roadmap, and every side effect and variation I encounter is a new thing no one was prepared to recognize.  I'm not sure how I can help - except to advocate for those who don't have the energy, and be there to support those who are having a rough time or who are new to stage IV.  We have to get better about pairing up survivors, so they don't have to reinvent the wheel as they go through treatments. And then, if we get to NED, we have to get better about support for long-term survivors who may well experience side effects no one prepared them to experience (because no one expected them to survive.)

Q.   Have you found – through your blogging and twitter communities – other women with metastatic colon cancer?

A.   Yes.  Unfortunately, metastatic CRC is an equal opportunity terrorist.  At Call-On-Congress last week, I met a 29 year-old survivor, who was diagnosed two years ago when she was 27.   But there really aren't a lot of Stage IV survivors, men or women.  It bugs me when someone begins a ‘stay positive' speech then casually says something like "many people are living for many years with stage IV colorectal cancer” when barely 10% of the people diagnosed with Stage IV live five years.  The median life expectancy is around 30 months, with treatment.  Ten percent of all Stage IV patients living five years is neither "many patients" nor "many years." It makes me crazy to say that to someone newly diagnosed as if it's truth.  It isn’t.  I want to ask, “who are the many? where are they?” but I’ve found that this doesn't go over very well in support groups.  If we keep telling ourselves many Stage IVs live for many years, then we're not advocating for better and more effective drugs that meaningfully extend and enable us to live. And by 'meaningful,' I don't mean extends life for a month or two.  I mean treatments that extend active life for a decade or more. And more would certainly be better.

 Q. And then – challenges of disease not withstanding – you’ve recently heard that your job will end in December of this year.  What is this transition period like?

A.  Honestly, it's a kind of hell. I'm working with 130 people I like and care about, and after the end of this year I may never see some of them again. These people have been a main part of my support system since I was diagnosed, so selfishly, I don't want to lose that. But other considerations are that people are leaving, workload is high, and there's a lot of pressure on us to perform at our old standards even though we're shorter staffed and we have additional projects because of the departmental closing. It's a pressure-cooker.  I love my job, I like the people I work with, I will miss what I remember my job to have been.  But the job I'm doing today?  That job is getting tougher to do by the day. I meditate at noon.  I try to stay low-stress.  I try to evaluate every task in light of 'this will affect me in what way?'  And I have a countdown calendar over my desk. 

Q.  I’m also curious about your work, which involves pharmaceutical research.  Specifically, you’ve been involved with drug safety evaluation.  How did your work help inform you when you were first diagnosed??  Where there any recommended chemotherapy drugs that you thought twice about taking?

A.  I was comfortable with all of the drugs, and still am. I understand them, I understand their side effects. The drugs don't really scare me.  In that way, familiarity with the drugs and the processes of dosing them from 23 years in the vivarium (the testing lab) definitely helped me.  I didn't have to focus on the drugs, and could actually listen to the doctor and to my body during treatment.

Q. Since you’ve been blogging for a while now – do you notice any differences between Pat and Gaelen?

A.  No - Pat is Gaelen and Gaelen is me. Gaelen was just a screen name.  I’m so used to using the screen name that I don't really think of it as a different me - it's the same me with a different name!
Q.  One thing you are not and truly have many reasons to be is a complainer.  How do you cope with the losses you’ve experienced from cancer and your cerebral hemorrhage?
A.  I have a counselor on whom I depend to help me keep my coping skills in tune.  I meditate every day. I try to stay in the moment, because I can usually control individual moments although I can't control either the past or the future.
Q.   You have so many wonderful interests that are all intriguing.  Since you’re still in winter – what activity takes most of your spare time now?

A.  Honestly, it's work and my writing.  I'm afraid dog training is taking a side-seat right now, because work is so intense.  I need to be at the top of my game to train new skills, so in times like this, I reinforce things that are solid but don't introduce new stuff.

Q. Just one last question.  How many different books are you reading right now?

A.  Hmm. I think five. I'm planning for a jam-making class this weekend, so I'm reviewing my Ball Blue Book, my Farmer's Wife Canning and Preserving Cookbook, my Home Preservation and Canning guide. And I'm reading a dog-training book called From the Ground Up about laying the foundation for agility training without the agility equipment.  And I'm listening – does this count? -- to Ruth Reichl's Garlic and Sapphires.  I have to admit, my reading these days is mostly blogs and magazines (conventional or online.) I need things that have stories that start and end in a finite period, like life.

Life Out Loud, Kitchen Jam, Dog Trainer's Log, Syr. Dog Training Examiner  You can follow Pat on Twitter @Gaelen2

In addition to her work, Pat also writes a blog on dog training and cooking. Here's a recipe she posted on Kitchen Jam.  The full post:  

Apricot Chipotle Freezer Jam

(makes 3 1/2 cups, or seven 4-oz. jelly jars)
2 lbs. apricots, pitted and quartered (about 3 cups, crushed)
1 1/4 cups white granulated sugar
1/4 cup dark brown sugar
4 tablespoons lemon juice
1/2 teaspoon finely shredded lemon zest
1 /2 teaspoon grated fresh ginger root
1 tablespoon pureed chipotle pepper*
1 package no-cook freezer jam pectin (I used Ball Simple Creations (R))
  • Pit the apricots, quarter them and crush in a food mill or processor until you have a slightly chunky puree.
  • Bring the crushed apricots slowly to a boil over medium heat.
  • While the apricots come to a boil, stir the sugars, lemon juice, lemon zest, grated ginger and pureed chipotle pepper together.
  • When the apricots come to a boil that can’t be stirred down, remove from the heat and stir them into the sugar mixture until well-blended. Let stand 10 minutes.
  • While the apricot and sugar mixture is standing, prepare the containers and their lids. Wash them in hot soapy water, rinse them and dry thoroughly.
  • After 10 minutes, stir the no-cook freezer jam pectin into the fruit-sugar mixture and stir until the pectin is dissolved. Stir continuously for three minutes.
  • Ladle the jam into the prepared containers (suitable for freezing), leaving about 1/2 inch head-space in each jar.
  • Let jam stand in containers for 30 minutes. Confirm that the jam has set, and then cap the containers. Jam can be frozen for up to 1 year, or refrigerate and use within 3 weeks.
Makes about 3 1/2 cups jam, enough to fill seven 4-oz. jam jars.
* Chipotle puree can be very spicy. You may want to stir it into the sugar mixture 1 teaspoon at a time, or to your taste.

C3:Colorectal Cancer Coalition and answer line:


Annemieke said...

LDear Jody, thank you so much for sharing Pat's story with us. Truly an amazing story and I'm happy I got to "know" her. You're both inspirational. Big hug to the both of you, Annemieke

Jody said...

Thanks so much. Pat called last week and we talked on the phone for two hours as easily as that! What I admired so much was her practical outlook on things (probably the scientific training) yet she was warm and funny, too. What a rare combination. Thanks for reading.
Hugs back,

Debbie said...

Great post and thank you Pat for sharing your story with Jody. I am a Stage IV Breast Cancer survivor who is currently NED and I do live from Scan to Scan, hard not to. Although I was not told my life would end soon, I was told the cancer would 'probably' come back. I am counting on them being wrong and on my meds working to keep me at NED. And as you I do what I can and try to live in the moment. Thanks for showing us the way.

Anonymous said...

Well done, Jody. I met Pat on the Colon Club support forum in August 2008 (I'd been diagosed with stage IV colon cancer with liver and peritoneal mets the previous May). She has since become a good friend and you really caught her essense here. Her honest approach to facing the harsh and frightening realities of this illness has helped me much more than those who have offered me "hope and prayers".

I'd call her an inspiration but she'd probably smack me. ;)

It occurred to me awhile ago that I never would have met Pat if not for the cancer, so there has been at least one very positive "side effect".

joinourloop said...

Jody, this is a really GREAT story, I loved the format, narrative, q&a, and recipe!


Unknown said...

This is a very interesting blog and so i like to visit your blog again and again. Keep it up.


Jody said...

Thanks for stopping by. Please do so again.


Unknown said...

This is very inspiring story. Even she has this illness she can manage to love every second of life. You may also go check this alternative treatments to cancer. Thanks for a wonderful story. Keep strong.