Strange Guilt in the Quest for Health

Dear Readers,

Health in the modern day and age is such a relative concept.  I dare you to Google "I'm exhausted" or "stomach ache" or "runny nose with mild fever" and come out of the search not convinced that you're dying from a rare and fatal disease.  We are ever conscious of growing epidemics caused by immunizations or not-immunizing or pesticides or false organic labels or too many documentaries.  Seriously, have you seen all of the documentaries on everything that's killing us?  All of the things are killing us and there is nothing we can do.  Despite the internet and my Netflix subscription and the daily health report on Dr. Oz, I'm happy to announce the following:

I do not have cancer.

However, I am not as happy to announce the following:

I have guilt over not having cancer.

Three years ago I sat by my best friend's side as he was eaten away by this terrible disease.  His cancer was in his liver, his colon, his kidney's, his everything everywhere and it didn't take long before he died (thank goodness for that.  I can't imagine him trying to get on with it, to be honest).  My Grandma.  Two aunts.  One uncle.  Two cousins.  My sweet dad.  A handful of friends.  All of them have gone their rounds with this stupid cellular attack.  All of them having different diagnosis, prognosis, treatments, and odds thrown at them.  Some overcoming it miraculously, some slipping away quietly with no one knowing, and some just telling their cancer to go straight to hell and beating the shit out of it.  Whatever the case, it wasn't (isn't) easy for any of them.  It's terrifying.  Straight scary.  But they dealt with it just the same.

Several years ago now, it was 2008 if my faulty memory serves me correctly, I was exhausted.  I lost over 60 pounds in a month.  I was covered in horrible, itchy rashes.  My joints were throbbing and swollen.  I went to a doc in the box, and she told me immediately that she thought I had cancer.  Mind you, no tests at all had been done.  Not a drop of blood not an x-ray not a pee sample.  So after telling me I had breast cancer, she did the x-ray.  She ordered the blood work.  I peed in a cup.  And after an agonizing long weekend (of course this happened on a Friday before a holiday), I got a call from her:

You do not have cancer.

It took another year and several different doctors and specialists before I finally landed in the office of a Rheumatologist named Dr. Loveless (he wears bow ties and looks like John Malkovich) to give me a diagnosis of "Undifferentiated Connective Tissue Disease".  Doesn't it sound made up?  I think it might be made up.  Like Fibromyalgia or Consumption (I know they're not made up but they sound like it).  The way it was explained to me was that I'm somewhere in-between Lupus and Rheumatoid Arthritis with a couple other syndromes attached, but that my disease hasn't fully developed and it could be decades before it shows it's true colors.  So basically, it's made up.  It's a funny thing, to have your doctor reassure you that you are, in fact, sick.  They reassure you with frequent lab tests, and horrific prescription drugs that present side-effects that are often worse than your symptoms (I've done chemotherapy, anti-malarials, and so many steroids).  But I know they're right that there is something wrong, even if they can't name it.  I know it because I've had to alter my entire life to take care of myself in a gentle and loving way to accommodate chronic pain and faulty joints, for which my doctor recently wrote me a prescription for, and I quote, "full body massage once a week, forever", yes, FOREVER.   I have had to set so many limits: limits on my exposure to the sun (which I love), limits to the amount I can drink (which I love), limits on my diet and my sleep cycle and my exercise.  I think my mom may have cast a spell on me to force me to follow the LDS "Word of Wisdom" (did you Mom?  You're so tricky!), or maybe it was just wise to begin with.  With the help of my friend and Naturopathic Physician, Nicole Pierce, I've replaced all but one of my prescriptions with supplements and whole foods.  With the help of my kindred spirit and body-work specialist, Heidi Jae Puckett, massage and reiki keeps my body and spirit in balance.

I do not have cancer.

After watching Loren go through his horrific ordeal and I was in the throws of fresh grief, I was in Dr. Loveless's office for a check-up.  He was asking me the regular questions about my pain and what not, when I told him there was nothing wrong with me.  That I had witnessed what pain is, that I saw what real suffering is, and that I was no where near it.  Not even close.  Dr. Loveless took me by the shoulders and said as sweetly as someone who looks like John Malkovich can say, "What you have will not kill you.  It will make you hurt and miserable, but you are not going to die from it.  But that doesn't mean you don't suffer, because I know you do.  Don't let your friend's tragedy stop you from taking care of yourself."

I've thought about that conversation a lot.  I've also replayed a moment I had with Loren when he was so ill, and so very very angry.  Angry that he didn't do anything to stop the cancer.  Angry that he was presented with the end of his life before his time.  Angry that he wouldn't have a family, wouldn't see the world, and simply wouldn't live.  Of course he was angry.  I was angry for him.  That anger has helped me to decide to take care of myself, to encourage others to do the same.  So back to my comment from earlier:

I feel guilty that I do not have cancer.

I've told you before that I am a carrier of the high risk breast/ovarian cancer gene, BRCA1 (remember the hilarious mishap while having a breast MRI?  No?  Go back and read it.).  This is significant for a couple of reasons: 1) everyone I know that is a carrier of the gene in my family has been diagnosed with cancer, no exceptions, males included.  2) I have the advantage of knowing that this is in my future.  3) I can take advantage of that information and do something about it.  With that in mind, after carefully planning and preparing my work and home, I took two weeks off of work and had a complete hysterectomy last week.  All of my lady plumbing is now gone, along with 98% of the risk for ovarian cancer, and 40% of my risk for breast cancer.  Just like that.  A three hour date with an amazing oncologist and a robot and I increased my odds of being cancer free significantly.  I am healing quickly and without issue and feel better than I have in years.  Now, isn't that a funny thing to feel guilty about?  I think of Loren, of my family members and friends that have or are currently facing the horrific facts of life because they didn't have a chance to take advantage of their genetic map.  I am so lucky.

I'll deal with my guilt though, because I get to live, I get to have a family, I get to travel and enjoy the sunshine and my job and my friends and my family.  And I want to do those things for a very, very long time.  It helps to also know that right now, as I type this, slides of my freshly removed and sliced up lady parts are being sent to research labs all over to study a genetic map that is a mess for me, but possibly very helpful in the research of genetics and cancer.  With that in mind, I would like to dedicate my uterus, ovaries, and fallopian tubes to the memory of my late best friend, in the hopes that his influence to take care of my own health so I can stick around this crazy world for a while will help to make sure that someone else with cancer can too.

Before I sign off, it's important for me to tell you that despite what you might assume from this blog, I'm not writing this for attention or sympathy or out of self-pity.  I do not need to use my health or the health of my friends for such things, that's what I have self-deprecation and Facebook for.  Rather, it's just been on my mind and I felt like it was an important thing to write about.  Please don't dig too deep into it otherwise.  And if you're struggling with auto-immune problems or cancer or just life in general, please reach out to me.  I can be a pretty okay listener on occasion.

Sincerely,
h.