Sorry That You Have Cancer ... Or Maybe Not

As you perhaps have heard, my biopsy results came back negative.  For those of you not well versed in the lingo of medicine, this is good.  Negative means that nothing of note or terror was found in the sample.  So, YAY, right?

Not so much.  Or maybe yes.  Oh, damn.  I can't say.

I'm glad that I don't have any detected cancer.  That's good, of course.  But, why then do I have swollen lymph nodes, a low white blood count, hair loss, changes in my vision and a PET scan that shows abnormal amounts of intake in the lymph nodes of my neck, abdomen, armpits and groin?  Am I just supposed to ignore these symptoms and findings, because the biopsy was clean?

Maybe a normal person would.  But I'm not a normal person.  No, no.  Don't argue.  We both know it's true.  I am quite abnormal in most instances, but especially in my medical history.

I had breast cancer when neither my mother nor grandmothers had it.

I had cancer when I was only 32, way below the age during which mammograms are recommended.

It took 6 months to diagnose my breast cancer.

While performing the mastectomy, my surgeon sliced a hole through my flesh - FROM THE INSIDE!

I did not heal as expected from the surgery, necessitating a blood transfusion.

As a result of morphine, I developed a tortuous amount of itching all over my body.

One week after the initial surgery, I got a call from the surgeon letting me know that it was possible that they missed the tumor entirely and took out a second one that they didn't know wast there.  I had to go back in for another surgery, even though I was too weak to open my own car door.

My hysterectomy scar came open, thus causing my ob/gyn to report that while the one incision was "an A, the other was a C plus."  Mm hmm, mm hmm.  Very comforting.

I had a nipple reconstruction that resulted in necrotic tissue and eventual loss of the nipples.

Although my results of the nipple reconstruction were far from ideal and the bedside manner of Dr. Dreyfus was abhorrant, there was nothing I could do about it.  My litigiousness was thwarted by a well respected attorney ... who happens to be the father of one of my old boyfriends.  Incisidentally, I had to provide him with photos of the nipples and the failure that ensued.  This is not at all an embarrassing endeavor.  Oh, wait.  I misspoke.  Yes, yes.  It is embarrassing ... and humbling ... and mortifying.  

When I told my oncologist that I was experiencing bone pain, he had to leave the room to look it up.  It turns out that only .02 % of cancer patients report the kind of symptoms I had.

Based on lab work and symptoms of clawdom, I  was diagnosed with Sjogren's syndrome.  (This is a disease that is often found in conjuncture with arthritis.  It was found when I complained of my being able to hold my toothbrush or walk down the stairs.)

I contracted Lyme's disease, without traipsing through the woods.

I developed an allergic reaction to bacitracin.

My implants were so close to the surface of the skin that they caused visible rippling of the tissue.

A simple surgery to remove and biopsy a mole on my neck turned more difficult, due to the fact that the incision popped open as I ran through a deluge of rain in the parking lot.  I had to go back in and get it  re-stitched.

Two weeks ago, when I called my optomitrist to complain that I couldn't see far away things (like whether or not my daughter was in the room) he said: "that can't happen.  The dilation drops don't do that.  It's impossible."  Oh, not possible?  I see.  (Or rather, I don't see.  I can't see anything.  There inlies the conflict.)


So, based on my history, it makes sense that I would have a scan that shows numerous areas of concern, but that the biopsy shows nothing, doesn't it?

Do we cheer?  No cancer!

Do we cry?  We got the wrong lymph node and have to do another biopsy!

Who knows?

Maybe someone, but I'll tell you who doesn't: my surgeon and my oncologist.  Their responses to the clean results were, respectively,

• "Don't worry.  If you have cancer, it would have been in the node I removed.  It was the biggest one.  I don't know why your PET  was positive, though."
• "Good news!  The scan showed no cancer.  I was sure that it was lymphoma, but it came back clean, so that's good news.  I can only be as certain as the test results, though.  You could have cancer in another part of your body."

Right.  Well, thanks for that.  I feel absolutely out to sea, now.  

And what does a Minnesotan do when they feel that their medical conundrums are not being solved?  They call the Mayo Clinic, of course.

Want to know how that went?  I'll tell you.  Aftter approximately 57 minutes (or maybe 8) of questioning and data input in the great Mayo database, my registration associate (who sounded about 12, if you want to know) told me that he would try to get me in to see neurology, as soon as possible.  WHAT?

Me: "Why would I see neurology?"

Pre-pubescent phone kid: "Well, that's the department that comes up in the computer for lymphoma."

Me: "Yes, but lymphoma is cancer.  I should see someone in oncology."

Pre-pubescent phone kid: "The computer doesn't show that as an option.  It says that the departments that see patients for your condition are: neurology, dermatology and hematology."

Me: "Well, I'd like to see someone in oncology."

Pre-pubescent phone kid: "Hmm.  Do you want me to check with them to see if this is something they would do?"

Me: "Yes.  That sounds like a good idea."

SERIOUSLY?

Dermatology?  

What if I was an idiot?  There are several in our world, you know.  What if I didn't know anything about anything and was a passive follower/patient.  Then I would make an appointment with a dermatologist only to learn that lymphoma is, in fact, an internal disease.  And, because it's Mayo, I would have travelled to the appointment to meet with the "Pimple Popper MD."  

If you didn't catch that reference, then you aren't a very good Seinfeld follower ... and I pity you.

So, now I'm at a crossroads.  And those closest to me are loitering there along side of me.  Should we rejoice in the negative?  Should we be scared that the biopsy missed what is obviously there?

It's confusing.  It's disheartening.  It's suffocating and bewildering and nauseating.  

We don't know what to think, and (although I realize this is a totally stupid thing to say) it would have been nicer if they had just found lymphoma this time around.  Then, I could start with chemo and start kicking this crap in the ass.  (Plus, I was really looking forward to cutting my hair, which continues to fall out at an alarming rate)

I don't like waiting.  

I don't like the unknown.  

I don't like hanging out on the steps between death row and freedom, without knowledge of how I got where I am or where I will next go.  

It's infuriating ... and calming ... and then frightening ... and then relieving ... and then maddening.