Your Cancer, Your Kids. What's a Mom to Say?

One of the first things that come to mind for many women when they're diagnosed with cancer is: how am I going to tell my children?

Martha Aschenbrenner, KNIT (Kids Need Information Too) program manager at MD Anderson Cancer Center in Houston, has a quick formula to help you get a conversation started in your family.  She calls it the Three C's:

• It's called Cancer.
• It's not Catching.
• It's not Caused by anything you did, or did not do.

Ms. Aschenbrenner is familiar with the topic as an educator, as a mother, and as a mother who was diagnosed with cancer when her own child was just four.  "Parents are at a loss when dealing with traumatic illness," she says, "because it completely upsets our normal role as a protector.  But silence is not honesty.  It is a lie of omission."

She has a number of great points -- which I'll list below -- as does CancerCare in this one-page handout.  Helping Children Understand Cancer.  Both underscore what you already know: be as honest as you can. You are already a terrific Mom.  Cancer won't change that.

• Don't be surprised if they ask if you're going to die.  That's normal.  Reassure them that you hope not, and you are being take care of by wonderful doctors so you will live a long time.
• Children react differently depending on their age.  
• Explain what will happen.  Concrete information helps them know that they don't have to keep  you "under surveillance." This is especially true for kids twelve and over. 
• Explain what will be different in their lives and daily routine.
• Before a child comes to the hospital to visit, or your appearance begins to change, explain in advance what they will see, and as important, what they CAN (as opposed to can not) do. It will help me a lot if you can.....bring a blanket, show me your new drawings, etc.

Two books you may find helpful:

• How to Help Children Through a Parent's Serious Illness, by Kathleen McCue.  St. Martin's Griffin Publishing.  An excellent handbook for parents who want information about helping their children deal with the parents's illness.  
• When A Parent Has Cancer: A guide to Caring for Your Children, by Wendy Harpham, M.D., Harper Collins Publishers. 

In Texas, and for additional helpful information: Wonders & Worries, a nonprofit that helps children cope when a parent or caregiver has a chronic or life-threatening illness.

What did you find helpful in talking about your cancer with your children?

Cancer: Round Two

This is how things change.

On Tuesday, April 9 we celebrate DH's (darling husband's) birthday with an extravagant dinner with friends at our favorite restaurant. We make happy noises about the food and pass around bites so rich it is absurd to even contemplate their arterial impact. We simply go with the moment and taste everything.

The next day I'm at MD Anderson for my yearly visit to the survivorship clinic. This will mark - let's celebrate anyway - my 15th cancer-free year.  The mammogram shows an anomaly.  We take another view. The second shot is inconclusive.  My nurse practitioner meets me in the exam room and says, "I don't want to alarm you, but we need to get another an ultrasound to make sure it's benign."

I'm not alarmed. Lobular breast cancer, which affects approximately 10 percent of all breast cancer cases, does not image well.  Never has, never will.  It's sneaky. The cells line up in a single file instead of clustering to form a mass.

But by the time I'm in ultrasound, where a radiologist in heavily accented English says, "Do not talk when I have needle in your neck," I realize, this is how your life changes.  I see the oblong node above my collar bone, a plump little dude, and the needle moving up and down within it.  For a moment something pierces. "So sorry," the doctor says, "I didn't put novocaine in the muscle."

I know.

The ultrasound room is so dark and quiet it has become its own universe, sealed off from regular life. Yet I know that behind the door is a small waiting room where four or five women in bathrobes are waiting. They read old magazines, legs crossed, feet jiggling and twitching. Those gestures mark time. They are waiting while I'm lying still, insanely comfortable on a new gurney (brand new, $4,000 worth of new, the wonderful ultrasound tech informed me) and bundled up in heated blankets. Then I realize a third person is in the room; the pathology assistant for the second, then third biopsy. The tissue will be analyzed immediately. I will know what I need to know what I already know from seeing the enlarged lymph node on the screen. Between biopsies I actually fell asleep. Right now that is my operating definition of mercy, to understand that another diagnosis of cancer is imminent and to be all right with that knowledge.

With cancer it's not one simple moment but a series of steps, one leading to the next. By the time I arrive home, when DH asks how my visit went, I have to tell him, "not well." He is a three-time melanoma survivor. "Not well" tells him something he never wanted to hear.

*  *  *

Since April 10 I have been largely offline,  either at MD Anderson or trying to get the next appointment in place, and talking with gracious physicians who have been generous with their time, explanations and kindness.  

Plus after 15 years NED I now enter the changed world of cancer diagnostics.  I am no longer a CT or MRI virgin. I drank the fruit-flavored barium smoothie, I've had the contrast IV's.  I ran into the inevitable young phlebotomist who missed a vein the size of a worm; I looked at her pleasantly and said, "go get someone else." 

The scans showed a different, but not rare, metastatic trail. There is nothing in the lungs or liver; but lymph node involvement and small nodules in the peritoneum and along a lymph chain that travels behind the diaphragm. There are positive nodes in the left axilla and neck, which were discovered by ultrasound. There is NO second primary cancer. All of this stems from the first cancer, so neither surgery nor radiation are needed at this point.

Biologically? The cancer's make-up is the same: 100 percent estrogen positive, progesterone negative, HER 2-neu negative. It's time to take away this cancer's food source. I'm about to be so thoroughly estrogen deprived that what I used to complain about menopause will soon become "the good old days." There are many options for shrinking this cancer and I have every hope that this will happen. The fact that it has been 15 years since my original diagnosis helps considerably. 

Last night I started treatment via the local Kroger's, where I picked up a prescription for Femara (letrozole), an AI or aromotase inhibitor. Where tamoxifen blocks the estrogen receptors on cancerous cells themselves Letrozole blocks the enzyme that converts androgens into estrogen in postmenopausal women. In premenopausal women the ovaries are the primary estrogen source.  In two months we'll look at what the Femara has accomplished, then consider the double whammy of Aromosin (exemestane) and Affinitor (everomilus),  another AI combined with an oral chemotherapy agent. With both approaches I'll receive monthly injections of Xgeva (denosumab) to shore up my bone strength.  

This morning DH wonders if I've experienced any side effects.  "No," I told him, "all systems are go."

It has been difficult, and still is, to relate to this new information.  Yet my life is different.  How I prioritize will be different.  One thing is steadfast: my commitment to #BCSM and advocacy. This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer. When there are times of complete stillness, I know all of you will be with me.  That is how I feel about you.  And that we are all in this together, in this moment and those to come.

* * *

Temporary Solution for a Critical Problem

 "As a doctor I took an oath to do no harm, but I fear there will be more and more occasions when I can do no good." - Hagop M. Kantarjian, M.D. on cytarabine shortage

Imagine hearing on the national news that a drug essential in treating your cancer was in short supply

That impossible scenario has been a reality for patients across the United States with acute myeloid leukemia, a cancer of the blood and bone marrow that destroys the healthy production of white blood cells. The shortage of cytarabine, the medicine critical in AML therapy, has left physicians in major medical centers to small towns faced with impossible problems and unimaginable decisions.

      
Hagop M. Kantarjian, M.D., chairman of M.D. Anderson Cancer Center's Leukemia Department, who calls the shortage "a national tragedy,"  described the problem in greater detail in The Washington Post.
      
"A colleague from Wisconsin wrote, 'We have been forced to form a panel of physicians, pharmacises and nurse practitioners to make make difficult decisions regarding ....this drug (i.e.., who can receive it and who can't).' "
      
Alicia Staley, writing on WEGO Health said Monday,  "As a cancer survivor, this is one of the scariest stories I've ever read."
      
Three things to understand:

1) Cytarabine is GENERIC.  It is incomprehensible to imagine, say, a shortage of Viagra (which isn't prescribed for a condition that can physically kill you relatively quickly, as in the case of AML).  The FDA has no authority to make any manufacturer produce cytarabine or even inform the public about issues that might cause shortages.  This shortage is not a problem in Europe.

2) There are three companies that manufacture cytarabine, described in greater detail in Alicia's post.
      

3) A compounding pharmaceutical company, Wedgewood Pharmacy, announced today that is compounding cytarabine, a sterile injectible. A company representative confirmed that Wedgewood has cytarabine available NOW.

Unlike the mortar and pestle image of the pharmacist in a white coat that most of us conjure up, Wedgewood is one of the largest compounding pharmacies in the country, with the facilities necessary for the safe production of cytarabine. Generic drugs are comprised of active pharmaceutical ingredients, or API, which compounders use basically as a "recipe" to prepare a medication.

Let's hope that this development with Wedgewood provides oncologists and their patients a workable alternative to an incomprehensible problem.  I don't know about you, but I still have more questions than answers.  The issue of generic chemotherapy shortages is alive and in an open file.
            
1/11/2011  NCI Bulletin: Continued Shortage of Chemotherapy Drugs Causing Concern
4/04/2001  Drug Shortage is Costing Lives 
4/14/2011  Cytarabine Crisis: Leukemia Drug Shortage Affecting Many Hospitals  - Richard Besser, MD, ABC WorldNews
4/18/2011  When the Drug You Need to Cure a Cancer is Nowhere to be Found

Bring It

One is not born a woman. One becomes one - Simone de Beauvoir

Last week I told my cycling buddy about some problems I've been having with my hip.  "Oh," she said, pinching an imagined bit of fat on her own hip, "it's a bitch getting older, isn't it?"
         No.  It isn't.
         It isn't a bitch getting older when you surrender cultural stereotypes about aging.
         Some 12 million cancer survivors in the US alone are more likely to say, BRING IT, BABY!
         Yeah, bring it on.
          
Something else, even more fundamental, had happened as well.
          When the hip pain started the week before in the middle of the night my first thought was that bursitis had kicked up again, not "it's cancer." 
           Slowly, over the years the fear that an unidentified ache, pain, or symptom might be a recurrence has eased and dissipated.
           Actually I wish this had happened sooner, but honestly, you can't ever go back.  You can only move forward.  There's a  lovely woman down the street whose breast cancer recurred twelve years after her treatment.  That fact stuck irrationally, an annoying bit of gravel in the back of my mind.  Mind you her treatment may have been different, the biology of her tumor probably was, a million differences could have separated our respective cases.
            I had no idea how deeply the fear was ingrained until I had my annual check-up at MD Anderson this month.  This year I was even "downgraded" to the survivorship clinic and met with a nurse practitioner.  I told her about my neighbor and her face softened.  "That's just so hard," she said.
            It is.  As long as I'm here I'll be working to change the reality of cancer for others.
            BRING IT.

None of us, as the POM ad so ridiculously says, will cheat death. No amount of creams, elixirs or potions will keep us safe from illness, wrinkles, or heartache.

But there's so much we can do -- internally -- to enjoy what we do have. Live life face first. Jump in the fountain.  Spend less time looking in the mirror and more time staring at the faces of those you love.
Memorize their features.

Bring everything. Bring it on.
           

Live large,
jody

Dean Ornish on Sustainable Lifestyle Choices

Imagine this. A friend has been diagnosed with an early stage, slow growing prostate cancer. After talking with his phyician he decided to start making some lifestyle changes instead. He started exercising. Then he changed his eating habits, took fish oil. First one thing, then another. After three months of significant lifestyle interventions something astonishing happened. His genes changed.    

        

I don't know about you but the thought that the lifestyle changes -- like my cycling for example, or your daily 3-mile run -- may actually change my genes sends chills up my spine.  And this was only one of the incredibly hopeful points that Dean Ornish, MD, founder of the nonprofit Preventative Medicine Research Institute (pmri.org) and clinical professor of medicine at UCSF made Tuesday at a lecture sponsored by MD Anderson's Integrative Medicine Program Lecture Series (CIMER).  Here's what Dr. Ornish had to say:

1) Our genes are not our fate.  

The example above is from an actual study conducted at PMRI and published in the Proceedings of the National Academy of Science (http://bit.ly/bXc8WO) 2008.  Thirty men with low-risk prostate cancer -- who had decided not to undergo conventional treatment -- were biopsied at the beginning of the study and then three months after making comprehensive lifestyle changes.  Those changes in part included meditation, yoga-based-stretching, and a weekly support group in addition to a plant-based diet and moderate exercise.  
        In a column published in Newsweek the same year, Dr. Ornish wrote, "We found that many disease-promoting genes (including those associated with cancer, heart disease, and inflammation) were down-regulated or 'turned off,' where as protective disease-preventing genes were up-regulated or 'turned-on.'...Dr. Craig Venter's pioneering research is showing that one way to change your genes is to synthesize new ones.  Another may be to change your lifestyle."
       Another thing that the researchers found, is apparent in the example. "Your body has a remarkable capacity for healing itself & doing so much faster than we imagined."  Conditions once considered impossible to change...may not be. 

2) Sustainable lifestyle changes are based on joy, pleasure and freedom.

Thirty years of investigating the power of lifestyle choices have revealed what works. "Fear is not a sustainable motivator.  There's no point in giving up something unless you gain something in returned,” he said. “I’d rather see us thinking about lifestyle as an actual treatment plan and not a preventative measure.”  Promoting health, instead of preventing illness, for example.
        Dr. Ornish eventually channeled his findings into a program and book titled, The Spectrum, a scale of choices in diet, exercise, stress reductions and nutritional supplements that can be applied for chronic diseases, including cancer.  "To the degree that you move in a healthier direction along this spectrum," said, " you're likely to look better, feel better, lose weight and gain health.  Then it's much easier to maintain the changes."  He wants to see people make informed choices -- not from fear -- but from an understanding of what they can do for their own health. “It's not ‘all or nothing,’ he said.  “We need to put together programs for eating and living based on what's right for the individual.” 

3)  Community builds health.

“Anything that removes our sense of community decreases health.  What ultimately frees us from our suffering  are altruism. Compassion. And love.  We can’t always cure but we can ALWAYS help people heal.”

For more information on Dean Ornish, MD, and the Preventative Medicine Research Institute: http://www.pmri.org/

Best of Spring

Today -- could it have been better? I had fresh sweet peas from the garden, my sister was here visitng, the breeze was gentle and dry, and I had a few moments to sit out back planning my next quilt.

Inside I'd put a coffecake on the counter to rise. It's for our friend Dave, and visiting family. His partner died yesterday of esophogeal cancer. He was 52. In between hearing this and now I checked the LiveSTRONG page a number of times and found out that cancer is the leading cause of death -- globally.

We all do what we can, as we can.

Just A Salad

Last week I finished the first salad I've had in months. Of all things this is the last test you'd think of as a measurement for metastatic breast cancer. But it's just one of the many ways this disease can impact the lives and health of the women and men it strikes every year.  As with primary breast cancer, you can take two different women with exactly the same breast cancer and how it manifests itself will vary.
      The salad itself was simple. Measly even, compared with the vegetable-laden salad bombs I used to toss together. It was all spinach, with hard-boiled egg, some chunks of chicken, mushrooms and a smattering of some excellent French feta (don't ask me who did the labeling on that one) DH picked up at the market. DH had made the salad himself, in fact, after his internist not so gently suggested he make a concerted effort to work more "green stuff" into his diet. He was out cycling so I figured if things did not go well he would be spared knowing that his creation, like so much other food, was quickly spit out by my digestive system.
       That's been the problem. After my initial mets diagnosis and accelerating through the summer and fall I continued to lose weight from nausea and vomiting. Blergh. It took my energy and my strength. Suddenly I empathized with pregnant women suffering from morning sickness. I took ginger in every conceivable form, threw that up, carried saltines in my purse, and ate teeny little meals. My nutritionist at MD Anderson became my inner cheerleader. Yes! I could eat every two hours! I would eat nutritionally-dense foods! I would add peanut butter to everything! I could do this! But when DH returned from the grocery with a carton of Ensure I suddenly felt like we were in the middle of a senior citizen sitcom with a lousy script.
      During this time I learned another rite of passage of the metastatic underworld: familiarity with emergency rooms. Emergencies in metastatic illness can happen quickly. Ultimately I did not wrestle with this fact but learned what I needed to do. Dehydration from vomiting can send you down a bad path. When the nurse scolded me for waiting too long before coming in I was about to turn pissy on her until I realized that what she was telling me was that witnessing suffering is hard. It didn't have to get this bad, she was telling me. The next time it didn't.

* * *

Beginning in June my regular oncologist was taken up by meetings, conferences and vacation.  DS (darling sister) and I joked about this upset by calling the substituting oncologist Dr. Today.  Unlike my regular onc, Dr. Today did not come into the exam room prepared. She usually appeared sleepy.  Or bored. Or both. I was convinced my cancer bored the hell out of her. Since I was on the vomiting end it was not all that boring to me. Not surprisingly, when my regular oncologist returned we talked for less five minutes before we had a GI consult arranged. 

      That brings me back around to my salad. As you know, metastatic lobular cancer was found in the lining of my stomach at the end of October. My oncologist told me that the aromatase inhibitor I was on, the formerly $4-now-$22 letrozole, would work at eliminating the cancer but it would work more slowly than chemotherapy.
       He was right.  It has been worth the wait.
       It was a year ago today that I was lying in the ultrasound suite at MD Anderson waiting for the results of a lymph node biopsy from my neck. You know the rest of that story, but the one I just told you is new.  There will be many more. As of now all systems are go in a gentler, slower way. Yesterday I just returned from five days in San Diego as part of AACR's Scientist-Survivor Program. I managed to practice self-care AND fully participate in the program.  No, I didn't get to the 7 am "Meet the Expert" sessions I wanted to attend, I missed some lectures, and I put up my feet instead of putting on heels for a late evening reception. When the mental fatigue and fog set in I remembered to keep my eye on the prize: learning, educating and advocated for women with breast cancer.
       And believe me, did I ever enjoy my salad.  Dear God, few things have ever tasted so good.

***

Graduation

I read somewhere that every woman faces the prospect of cancer every time she has a mammogram.  Obviously as a survivor I do the same.

Yesterday at M.D. Anderson was different for some reason. Every year following my treatment there from 1998 - 2001, the first quarterly, then bi-yearly, then yearly exams have become easier.

And yesterday I was damn near chirpy, looking around for my favorite parking places (for my butt, not the car) and watching how beautiful the pink everblooming roses were in the grey planters outside the Mays Clinic Building.  I even met for coffee with Jennifer Texada, who I had the good fortune to meet at the Social Media conference earlier this spring in Austin. Just saying hello to her is an upper.

But I have to confess.  For the five? six? seven? minutes I was hanging outside the mammography suite while the radiologist reviewed my scans my thoughts went right down the tube.  Just like an instant replay, I mapped out what I'd do if a potential malignancy was spotted -- and who'd I even talk to this time that I had not consulted before.  Before the first sixty seconds had elapsed I'd signed on for a skin sparing mastectomy w/implant to avoid five-six weeks of radiation.  Good, I thought, I'm all done.  I have a plan.

Then I lucked out in two ways.  A lovely volunteer (who'd actually helped me find coffee earlier) stopped by and she sat down and chatted.  She was awesome, and told me her story, about how and why she traveled to MD Anderson from DC when she was diagnosed two years before I was.  In the next moment the tech popped her head out the door, and grinning from ear to ear said that the doctor said my views were "perfect, no change."

After that I had a follow-up appointment with a nurse practitioner and even better news:  I was being demoted, in a sense, from being followed by specialists in the breast clinic to the cancer prevention center,  from diagnostic mammogram, where the image is read right then by a radiologist, to a 'screening'  mammogram.  In essence this means I'm falling back to a much more normal risk for breast cancer.  I graduated.  You can't ever say never, but let me tell you, this is one graduation I never aspired to but am immensely grateful I didn't miss, either.

What yesterday left me with was a greater than ever urgency to continue advocating on behalf of all women -- of all ages -- for better, more effective treatments for all cancer affecting women.  I want all of you here with me so we can celebrate our victories together.

What about you?  Do you worry about breast cancer when you go for your annual mammogram?  Do you think you always will?

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.

Blogs:  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:  http://bit.ly/bVFcfaand  

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 http://fightcolorectalcancer.org/ and answer line: http://fightcolorectalcancer.org/awareness/answer-line