Sometimes I Get Scared…

Most of the time I rock along feeling that I will be here a long time but any change to status quo is unsettling and often fear provoking.  I have been through more treatment change-ups than I can even count now and those shifts are unsettling, usually because of uncertainty of the side effects.  With as much and as frequent as my chemo treatments change there is a lack of side effect predictability.  I never seem to quite understand the rhythm of any given treatment and am left wondering “Is this a nasty, cumulative side effect, or am I getting sicker from cancer?”.  I’ve recently switched up and have had two cycles of a new regimen.  The first cycle was somewhat as expected, if not a bit worse than I had hoped, but they all are.  The second cycle seemed much worse, but it was also complicated by a UTI along with prescribed antibiotics for that.  I am out and out afraid of antibiotics – with good reason.  Two years ago while hospitalized I contracted C-Diff (clostridium difficile); a nasty little bugger.  It recurred quickly following each of two progressively aggressive rounds of antibiotics targeted specifically for C-Diff bacteria.  The statistics for future recurrence or chronic condition after two recurrences is quite high.  I consider myself lucky to have become symptom free after the third antibiotic round.  That said, it is safe to assume that I still carry the bacteria but it is kept in check by the good flora in my gut.  When asked what I could do to prevent a recurrence of C-Diff, the GI specialist I was seeing at the time said “Avoid taking antibiotics”.  Well, there you go and here is where broad spectrum antibiotics, such as those prescribed for a UTI, are a problem for me.  They destroy good gut bacteria allowing C-Diff to dominate the gut.  I cannot go back there again.  Anyone who has had C-Diff will probably readily agree that it is a very special kind of misery.  It is also quite dangerous, particularly if already battling a health issue. I seemed to be getting sicker each day following my second round of chemo and being especially sensitive to the C-Diff reality, I stopped the antibiotics after 3 days and began the probiotic Florastor which specifically targets wiping out C-Diff.  I began feeling better after a couple of days.  Has my UTI completely cleared?  Probably not and only time will tell.  I will cross that bridge when I get to it.

This is where fear and reality hit.  I may not look it and I mostly may not feel it, but I am fragile.  Complications of cancer covers a broad territory, but basically any health issue, even common infections, can spin things out of control.  I know this. I’ve seen this. This is not paranoia.  Suddenly then, I find myself thinking those dark thoughts of  what-if? and will-my-family-be-alright? and telling God that I-am-not-ready.  Ha! Then there’s the running list in my head of things that must be taken care of that I keep putting off.  That damn list.

I will have my third round of this chemo tomorrow and, without complicating it with antibiotics, this should give me an indication if C-Diff was at play or if the chemo is just rougher than expected.  I’m not even sure what I’m hoping for!

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“We are never owning a mini-van…” and other things that creep up on you

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I love that State Farm commercial that’s running on TV now.   It begins with a young man at a pool party with his buddies and he declares “I am never getting married” just before making eye-contact with a pretty girl.  Next scene, he’s buying an engagement ring.  It follows that he and his wife are in a plane with a crying baby behind them. “We are never having children” he says.  Next scene is in labor and delivery.  And so it goes with moving to the suburbs, having a second child and then the dreaded mini-van in the driveway.  The commercial ends sweetly with the man and his family together on the couch and him saying “I’m never letting go”.  He’s happily all-in and embracing a new reality, hook, line and sinker.

We all say at one time or another that circumstances and life changes won’t change us.  We all believe that we will be the same person we always were, with the sometime exception of conscious and deliberate growth to be a better us.  We try to look and behave as we did in our 20’s and 30’s, (hey 40’s would be good) for as long as possible but give it up before we look completely ridiculous.  We try to remain a regular Joe or Jane while working hard to climb a social and economic ladder.  But if we are honest, we do fundamentally change as life circumstances weigh in.  These evolutions of our selves are best shared with our spouses, siblings and friends.  We generally change in sync with those around us and it feels natural and can be fun and even enlightening.  We’re all in the same boat, and that is comforting.

There’s change that happens sometimes that is not in sync with the rest of our world and that can be uncomfortable and lonely.  Maybe you were the first of your couple friends to start a family.  For some time you felt odd-man out.  You had changed to parent mode, leaving the late night partying and weekend warrior activities behind for, well, parent stuff.  Same if you were the last to have babies.   You couldn’t find a single gal pal to hit the clubs with you or shop til you drop on a Saturday.  What were once easy conversations with your friends became more difficult because the threads of common interests weakened.  If you were the new Mom and Dad or the last no-kid couple of your friends social interactions became more like work.  The ease was gone.  You may have even left some friends behind to find new ones that were more relatable to your life’s changing experiences.

There are a lot of clichés applied to the fight of cancer.  “I have cancer, cancer does not have me”.  “Cancer can’t change who I am”.  “If I show weakness, the cancer wins”, etc.     These fight songs are really pretty helpful upon initial diagnosis and first-time treatment.  A patient can repeat them as mantra to keep their morale and spirits up for the “x” months of surgeries and treatment.  Chronic and recurrent disease is a little different and not as often recognized by the cancer kumbaya marketing campaigns.  Like the cute commercial, the first eventful change (boy meets girl) takes on it’s own momentum.  Just as the couple go through identity evolution over time, the chronic cancer patient does too.  It inevitably seeps into your identity.  I am a woman.  I am not good at compartmentalizing things so my disease is with me all the time.  (The implication here in case you missed it is that men are usually excellent at compartmentalizing…drives us ladies nuts).  Something that I live with and actually feel every day of my life has changed who I am.  I am a cancer survivor an a cancer patient in active treatment.  I am often consumed by my disease.  The doctor visits, the now daily chemo pills I take, the review of frequent PET scans and lab results and the growing arsenal of medications for side effect mitigation and pain control.  It’s like I’m the first of my friends to have a baby and my focus has shifted and is consumed by the new baby.  Even if I get a sitter and go out for the night, I’ll be calling to check in frequently and want to talk about my baby while my friends struggle with what to say because they can’t relate.

I guess you could say that I’m all-in to this reality but only reluctantly and resistant to accept hook, line and sinker.

Now that I’ve over-explained, what I want to say is that I appreciate all those around me that haven’t moved on to find more relatable companions.   I recognize that the ease of all my relationships is tested, as a wife, a Mom and a friend.   Being an introvert anyway makes retreat a too-easy option and I often struggle with letting myself turn too far inward.    It must take great love and patience to continue to reach out and I love and appreciate all my friends and family for their patience with me.

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A Survey and the Hard Truth

I recently received a research survey asking how my life has been unexpectedly impacted by a cancer diagnosis. I jumped right in to answer but stopped short. The answer I wanted to give was about how my cancer diagnosis has made me a better person and go on to enumerate the many ways I have enriched mine and my fellow-persons’ lives. But that is not the truth and I’m nothing if not honest.  I had to take a couple of weeks of self-examination before responding.   What is true is that my cancer experience has made me desire to be an all around better person and has moved me to work on a few things, but I’m not there yet and may never be.  To be honest (as if I would be anything else) I don’t think I was a particularly bad person before, but there is always room for improvement.  I am mostly self-aware of my flaws and definitely more critical of them than others.  To start with, I’ve never been an especially patient person and while I believe I’ve grown more patient with small day to day activities, such as traffic, shopping, chores etc. I am less patient with the bigger things. The ideals and plans for my and my husband’s retirement years become more urgent to reach. I feel a pressing need, desperation even, to make every plan happen and happen fast.  I live and plan in one year increments only. Beyond one year, I don’t plan. If something I want to do or have looks to be more than a year away, I push it aside and detach myself emotionally from it.  What I have learned, along with the pitiful realization that I’m still a very flawed human, is that my dance with cancer makes me extremely anxious and even more impatient than ever.  I admit that I am having trouble managing this.  I know my problem.  I continue, as I always have, to look toward the future for my utopia instead of making right now that blissful existence.  It goes something like this.  When the kids are out of day care, we can…..; When I get that next raise, we will have…..;  when we move to our next home, things will be…..; When the children are grown, we can do….;  When we retire, life will be…..; On and on.

Maybe some of you have been there, looking for everything to be perfect someday?  I’ve always done this type of speculation of the ideal.  The lesson I’ve learned (over and over and over and over…) is that I will never recognize some future ideal when I get there because I will still be looking beyond it!  Happiness has to be made and recognized in the here and now.  But old habits die hard.   There’s a Buddha quote on the wall of the yoga studio I attend that I like to park my mat in front of and read the words over and over throughout the practice.

The secret of health for both mind and body is not to mourn the past nor to worry about the future but live the present moment wisely and earnestly.

If I recite this to myself enough times every day, perhaps I will begin to actually live it.  I might need a recording of it on a computer chip implanted in my brain to play on continuous loop!

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Where is my Team?

I’m sure many of you are familiar with the cancer hospital and treatment center commercials on T.V., radio and in print.  You know, the ones with smiling patients playing basketball or cycling along the beach with their grandchildren.  I didn’t pay too much attention to these ads until I became a cancer patient and then started to really listen to them.  One of the features heavily advertised is the concept of integrative team care.  There would be a nutritionist, a surgeon, a psychologist, an acupuncturist even and beyond.  An entire safety net to cater to your every current and potential need.  My reality is that none of that presented itself to me, at least not in the way I expected.  (I’ve been told I have high expectations.  I also anticipated soft music and gurgling waterfalls when I walked into the infusion center the first time).  I often wondered “Where is my team?”.

I asked my oncologist early on if he consulted with other oncologists on my case.  His response was clear. “No, I’m a lone ranger on this”.  (He has an interestingly blunt way with words).  I didn’t like this one bit.  I didn’t say it or even realize what I was expecting to be true but my retort could’ve been something like “You mean you don’t sit in a room for hours several times a week with several other highly paid doctors and researchers and discuss each and every patient’s case ad nauseam to find the one right and best solution?!?!?” 

Some background is required to explain my expectations.  I’ve worked in a corporate environment my entire career.  Absolutely no decision of any weight (much less life or death) is made independently.  In my professional experience, at least half a dozen decision makers and/or the ever inclusive and expanding stakeholders are consulted.  Meetings are held to cuss and discuss the pros and cons.  One meeting usually leading to discovery of more stakeholders and subsequent larger meetings.  So when I compare my professional experience with that of, say, a doctor I am glad the decision structure is different!  Oncologists must keep the treatment train running non-stop for their patients.  Imagine the delays in treatment decisions if the medical oncology practice worked as corporate America does?  Don’t get me wrong, I am not being critical of the effectiveness and efficiency of corporate culture (wink-wink).

But yes, I actually do have a pretty darn robust team.  I am the leader of that team, no one else.  And I’ve built my team over time based on need just-in-time need.  After all, if you try to build an entire support team in advance of knowing what and when they are needed, well then you have…corporate culture. (think waste and inefficiency).  I’ve used a nutritionist that was made available to me in my cancer center when I needed a nutritionist.  I have a gyn-onc surgeon that did my original surgery that I see periodically for his consult.  I, of course, have my right hand man – medical oncologist.  I have a psychologist that I found through recommendation from a friend that is integral to my team now.  I have a support group that I stumbled into when I needed it most and I even have a general surgeon that knows my health situation that I rely on for all surgery needs, non-cancer.  I found him through my local ER and have had to avail myself of his services twice now.  I like my team.  Some I chose and some just happened on me, but I am happy with my support team and I nurture it.   And of course I bring in and keep close my friends and family as important team members, each providing different kinds of support for different situations.

My team is not what is advertised by the big fancy-schmancy cancer centers (names withheld to avoid backlash), but I would venture that my team, for me, is the best and I recommend to anyone in a similar health situation to build their own team too.  Make your team fit your needs as you discover them.  No one else knows or can predict what your needs are and will be down the road.

Many thanks to my team!

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Battle or Journey?

I’ve read a few articles lately about the negative connotation of the term Battle for cancer patients.  There is science supporting that the analogy of cancer as a war to be won puts tremendous burden and even guilt on the patient/soldier.  How many times has a well intentioned friend or family tried to encourage me by telling me to keep fighting fearing that if I am not fist-pumping I am giving up?  Too many times.  There’s a push now to replace Battle with the gentler Journey. Here is just one of the most recent articles I’ve seen.  What do you think?
We’re Finally Winning the Battle Against the Phrase “Battle with Cancer”.

The first onset of a cancer, we are ALL IN for battle.  Our fight or flight adrenaline is ON.  I think Battle aptly describes this situation.  It’s all we know how to do against cancer at this stage.  Grit your teeth and lean your shoulder in and push.  Management of cancer as a chronic disease becomes less of a battle and more like a cold war that maybe one day becomes a respectful truce.   It is in this scenario that you have to learn other more strategic and less brute force survival techniques.  Fight or flight adrenaline will not serve you well for the long haul.  I now do less fist pumping to my cancer and more negotiating.  “O.k., you stay where you are within certain boundaries and we can co-exist peacefully”.

Only after many years with cancer do I now lean toward the term Journey.  The more prominent analogy of Battle was only gradually replaced with Journey, and not fully replacedAfter all, one can sustain battle for only so long before growing too weary to continue.  A journey however can ebb and flow, providing rest and pleasant distraction along the way.  My top photo on this blog is not by accident.  I take pictures of paths everywhere I go.  That is exactly how I view this life with (or without) cancer.

Both images, Battle and Journey, apply to living with cancer, evolving and changing over time and across circumstances.  There is a common emotion that I’ve recognized where I choose Journey over Battle as my descriptor and that is appreciation.   I appreciate my resilience and strength. I appreciate the gravity of the burden I feel.  I appreciate that I have physical limitations.  I appreciate waking well rested and with no pain.  I appreciate every step I take up the hill in my nearby park.  I appreciate a slice of pizza and cold beer at our favorite pizza joint.  I appreciate a morning yoga class.  I appreciate completing a household chore or project.  This is the stuff of a Journey.  But battles are a part of the same journey.  Along the path there are obstacles that force me into battle;  bad PET scans, chemo side-effects that get the better of me, hard surgeries, aggravation and fear.  These are things to battle through but hopefully the battle is swiftly won allowing the journey to continue.   Life is the journey, cancer is a road on that journey and battles of all kinds litter the path.

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Recommended Reading

There’s a lot to read on the topic of health and cancer and there are many more on my “to-read” list but here are a few of my favorites so far:

 

Radical Remission I almost put this one down in the first chapter after reading the list of 9 “radical” lifestyle and diet changes that would be required to beat cancer.  But I read on and was glad I did.  Don’t be scared away as I almost was.  As I read on there were some changes that really resonated with me as things I could do, and I became motivated and encouraged to make those changes.

Anit-CancerI found this one fascinating.  A little more intimidating that Radical Remission in as far as making significant changes in lifestyle.  However, the research and data around cancer in our modern life was eye opening.  This book is very educational for those wanting to understand how the body and cancer uses food as well as environmental influences.

Being MortalThis book is not specifically about cancer, but is a fascinating view into the state of health and longevity in our modern society.  I personally think this book should be required reading for all medical students.  Maybe it is.

 

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Cancer is a gift?

I have heard and read so many stories of cancer survivors that have described their journey with cancer as a blessing, or a gift.  I’m like “Really? Are you serious?”.  Lets recap briefly shall we.  For the past five+ years I’ve battled. For most of that time I have been in some form of chemo treatment.  My life has been completely uprooted.  My career ended abruptly.  I deal with physical illness and weakness off and on, in and out of treatment.  I live with a fear and anxiety unlike I’ve ever known.  Continue reading

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