Not meant to survive

Posted by on Jan 10, 2014 in Cancer Care, Life & Health | 15 comments

Not meant to survive

16,500 years ago in wind-driven snow on the massive Beringia land bridge between eastern Siberia and present-day Alaska, a Paleo-Indian hunting party of four men cornered their prey, the Arctodus or bulldog bear, at the edge of a cliff, as the ice laden steel sea crashed far below.  The last of his kind, at nearly 2000 lbs, the furious mammal towered above his thin, frail, spear-armed attackers.  Already wounded, it lashed out in a frenzy to survive.  The massive paw caught the side of the nearest man, crushing his skull and somersaulting him into the air. But, even as his body flew over the edge, two flint-tipped points penetrated the bear’s heart and it was dead before their brother’s lifeless body hit the rocky shore.  A great victory, the kill would feed the clan for weeks of winter and rap newborn infants in thick fur. They would miss and mourn their kinsman.

Such has been man’s struggle of life and death for hundreds of thousands of years.  Short, violent, painful, and absolute.  Whether it was harsh weather, the battle for food, childbirth or brief disease, we lived or died. It did not require an understanding of possibility or prognosis. This was the world in which the human race evolved, conquered and, a few, survived.

In 2014, the control of our environment, sanitation, relatively stable governments and medical science has radically changed that world.  While short death is possible, it is not the rule.  In the United States, the average man will have his terminal disease for three years and a woman five.  Medicine makes illness chronic and healthcare stretches time.  No longer is dying about this moment. Dying is something we do slowly, perhaps for years.

This is victory.  Most women with breast cancer are cured. Most men with prostate cancer are in remission.  It is possible to live for years after lung cancer, bladder cancer and occasionally pancreatic neoplasm.  This is good. This is wonderful.  Nevertheless, this is a problem.  We are not meant to survive.

Our minds are wired to fight the bear.  Fight or flight.  Live or die. Then, it is done. If we are dead, we are dead.  If we are alive, then we have won and we are fine and we are healthy.  The bear is not going to climb off the cooking spit and attack us again.

However, if we “survive” cancer, there seems always the chance, no matter how small, that the cancer will come back.  What really is our prognosis?   Did they get it all?  What does that pain mean?   Am I supposed to be this tired?  What does the future hold?  Our brains are designed for fighting a battle to survive which is a roar, not a haunting whisper.  We understand that we are safe when we see no bear.  How can we convince ourselves we are safe when we cannot see, barely comprehend the enemy, and there seems to be nothing we can do to really be safe again?

That nagging doubt, which seems to remind us too often that we are cancer patients, does not mean we are insane or weak.  It means we are human.  We do not survive well.  It is normal and common to be reminded of the disease by nearly every pain, ache, fever and even the common cold.  It is not crazy to worry that the soreness from your flu shot just might mean the cancer has spread to your arm.  It is how we are designed.  Listen for the bear.  See the bear.  Kill the bear. We are always alert, but we feel that battle should be brief, brutal and then complete.  With cancer, how can we convince ourselves that the fight is won and we can truly rest?

First, recognize that these feelings are normal and will come and go, hopefully less, as time passes.  Do not beat yourself up simply because your mind works like every person in the last million years.  Learn your triggers.  The next lab test?  Breast cancer month?  Aunt Millie’s stories?  The holidays? Body aches?   Try to avoid or anticipate their effect.  Put them in a broad perspective of feeling healthy.

Next, design, in coordination with your doctor, a surveillance strategy, whether it is exams, tests, or just the occasional discussion.  Research that strategy; understand how it works, and how it will protect you.  Invest the emotional burden, the anxiety, in that plan.  Try to release your tendency to use worry as a blanket.  Trust the plan.

Do things to gain control.  Exercise?  Anti-cancer diet?  Reiki?  Yoga?  Teaching? Volunteering? Art? Work? Travel?  Sex?  Reading? Taking active command, organizing your future, is not denial.  The key to killing the bear is action and control.  No hunter ever talked a bear to death.

Do not be embarrassed to share that you are frequently threatened by the possibility of relapse.  Discuss it with family or friends, counselor or a support group.  You are not nuts and definitely not alone.  This is what they were talking about when they said, “misery loves company.”

The world has changed. Our minds are alert, vigilant, and ready; but you are still a hunter on the harsh Bering Sea ice.  But now, when you survive, the shadow of the bear remains.  Thus, you must continue the fight.  You are strong, you are able, and miraculously, you are alive.  Flint arrowhead tipped spear at the ready.

15 Comments

  1. Dear Doctor, what you wrote is so true-and it blinded almost every doctor I met this summer. I had strep for 5 months-May to October 2013. I finally ran into an elderly doctor that ran a strep test. It was acute-the antibiotic almost worked-it gave me relief for about 2 weeks. The strep was killed by a new PCP. I told him it was an infection-I do not have dry mouth-Immediately the new PCP began telling me how to care for a dry mouth. I screamed -LOOK- Put my hand out and spit a goober in it. The strep test was positive. The muscles in my throat finally stopped hurting bad in early Dec. and I swallow better every day. I consider the muscles in my throat to be the same as an injured leg or back muscle that’s had to work without care. I tell doctors this-then a light bulb turns on.

    In a few hours, I’ll see my beloved radiology oncologist that missed all of this, because I could tell it wasn’t from nose-mouth radiation-I felt good until I got the strep-I had 2 great months of walking the dogs, house cleaning, etc. I have to honestly tell him that my goal for the summer was to get my strength up to what it was when radiation was finished. I haven’t had the luxury of wondering if a pain is related to cancer. A few weeks ago, I told my head oncologist that I don’t understand why the HMO oncology unit treats me so well, and the primary care, ER, and Urgent Care neglects me so much. I even paid out of my pocket for my family members to go to Urgent Cares and get a strep test to make sure that we weren’t cross-transferring.

    They used to have a song-DON’T LET ME DIE WITH MY BOOTS ON- I’m not suicidal, but I always expected to die with my boots on. I rode bare back broncs and team roped, so it wasn’t just an empty expression. I’m one of the few women that used one hand on the rig. When I have a message, they ask about all the little bumps that are around my right scapula. They are like spot welding to repair a weak area-scar tissue. So off to see my hero—-

  2. Massage-massage on my back

    • Mey, when my daughter was young, she constantly had strept
      throat…over and over. Finally, the doctor gave her a shot in her
      thigh, and she never had it again.

      I also found out she’s allergic to penicillian so I don’t know if he
      changed the antibiotic for the shot in her thigh.

      Keep on riding, Mey….that’s your way of getting rid of any stress!

      • Mey, sometimes I eat som, and then about two hours later, I would get terrible pains in my chest. I get myself nuts because I immediately think of cancer. I drink milk and soothe my throat with cough medicine. It works…but then that’s the end of eating any red sauces, tomatoes, sweet onions and meats.

  3. Beautifully crafted overview of the D-word, Dr. S. There’s an old nurses’ joke you’ve probably heard many times (no offense intended, of course):

    Q: Why do they put nails in coffins?
    A: To keep the oncologists out

    The implied message is clear: that death is a terrible mistake, that it should somehow never happen, and that it must be valiantly fought off at all costs, even when that fight turns our final days or weeks or months into a living hell of aggressive and often futile “treatment”.

    A century ago, my life expectancy would have been about 50 years. That means I would have died eight years before I actually survived a “widowmaker” heart attack and the debilitating cardiac issues that have left me facing a chronic and progressive disease in which every single day I am compelled to ask anxiously: “Is this something? Is it nothing? Should I call 911?” On the plus side, many years ago I survived two births despite serious complications delivering my first baby, and a nasty ruptured appendix and peritonitis that should have killed me in my teens had I lived a century earlier.

    We are simply outliving our communal Best Before Dates.

    • Always one of my favorite jokes. I never fail to smile.
      jcs

  4. I think that this discusses one thing many people who have not had cancer don’t understand:

    1) getting cancer is an emotional earthquake that tends to be processed how grief is processed— at first the intense periods of emotional pain are close together and long lasting with only brief intervals where you emotionally feel somewhat better and/or can forget for a moment your grief. Then as time goes on the periods of intense pain are further and further apart, shorter and shorter in duration but not really much less intense when they do hit. Translated into anxiety over cancer it seems to be, in my experience, about the same. The first time around it took me about 4 years not to think about cancer every single day. I am not there yet with cancer number 3, although I only rarely anymore have moments of anxiety/panic over having cancer and its implications.

    2) You don’t just “get over it and put behind you” having had cancer the day after treatment ends; you don’t just close that door and never look back. The emotional fall out lasts much longer and as you stated, there are many triggers for the residual worry that the bear may attack again.

    3) While as they say ‘life is a terminal disease’, it is hard to live life if you focus on that aspect of it. Cancer patients (and others with serious conditions) have to learn, again, how not to focus on it since they have had an encounter with the bear and the bear took a bite out of them and then they lived. It is easier to ignore the bear if you never had had a bear encounter up close and personal in your face.

    I also think that many oncologists underplay/underestimate/discount the emotional aspect of having or having had cancer and patients are left to their own devices to figure out how to continue living life knowing they have already been bit by the bear and the bear is still or maybe still stalking them.

    • Liz, thank you for adding to the wonderful insights by Dr. Salwitz. During the three years my late husband spent trying to kill the bear, we were, as you pointed out, completely left to our “own devices” to figure out how to live with the far-reaching effects of his diagnosis and treatment that went well beyond the physical/medical. Survivorship wasn’t a term we were even hearing back then.

      Treatment is not the end…diagnosis and treatment are just the beginning and survivors deserve access to strategies and resources to rebuild their lives and create the changes that best support them on a path to greater health and wellbeing relative to their challenges. Survivorship can no longer take a back seat. It must have clearly defined steps, support, tools and protocols, including metrics just as treatment does currently. I am on a mission to “up the ante” in survivorship care and transform that part of the experience by drawing on the powerful tools of coaching that lead to more empowered, engaged and energized survivors. Survivors can no longer be left to their own devices. They deserve more…now. Thank you for clearly stating what you see is needed. Advocates, I believe, will be the driving force to build momentum in providing meaningful approaches to survivorship over the next several years. Keep speaking up. We’re starting to be heard.

  5. Thank you. I read this twice. As always, you REALLY get it.

  6. But with an incurable cancer you do not get a break. Yes you learn to live the best you can with the cancer but you are often in battle on mode. But what does not kill us does make us stronger.

  7. I second Stephanie’s remark that “you really get it”. Thank you so much for sharing your writing with us.

  8. What do the best hunters do?

    The best hunters find the most effective weapons that work for them; not fads or gadgets. They learn to use those weapons extremely well. They keep their weapons (and themselves) sharp, clean and in good working. They watch and listen for signs and clues of “the bear.” They fear and respect the bear. They understand that the bear could be around any corner, at any time. They don’t delude themselves into believing that the bear is around every corner, all the time.

    We have a vast amount of medical information available to us all. We need to be open and willing to learn from that information along with cultivating the skill to separate “the wheat from the chaff.” Expressing this knowledge won’t necessarily make you popular with many in the medical community. More likely, it will make you particularly unpopular amongst those medical practitioners who lack confidence in their own knowledge and skill set(s).

    But this is not a popularity contest. This is not about who’s right or who’s wrong either most of the time or, the unlikely, all of the time. This is about survival. This is about YOU.

    We all need to be the best hunters. We need to learn all that we can about “our prey.” We need to build our weapons arsenal with those that work for us though they may not always work for others. We need to ask questions…lots of questions…of those we trust. We need to collaborate with them, not “tell” them or “be told to” by them.

    If we listen to our amazing bodies…watch for signs and clues…our bodies have yet another truly amazing way of telling us when something is wrong and, many times, what they need from us.

    The “best hunters” pay attention.

  9. Doctor Salwitz,

    Your posts always confirm the passion you have for your work, and how deeply you truly understand your patients. Thank you

  10. Amazing how this hit the nail on the head. I have cancer and have received bad news today and have been thinking how do you get through this without losing you’re mind. How do you keep going? I have become more active since my news about my options like stem cell and I want to feel like a hunter which I’ve always been but also feel like someone kicked me in the stomach. I’m trying to hold the contents down now. Thank you for your wisdom.

    • I am sorry to hear this is a bad day. Hang in there … you have many of us on your side. You will not run out of courage or inner strength. One step at a time … they will not all be up hill.
      jcs

Leave a Reply