Good News… And The C-Word

Some good news!  Turns out my dad was right all along—the squeaky wheel gets the grease!

All Proton Therapy patients get free parking at the hospital because we have to be at the hospital every day for treatments for about 2 months straight.  If you know anything about Center City Philadelphia, you know that parking is a BEAST.  My husband (who knows things like this) even considers parking in Philly to be harder than New York City!  And that is saying something.

So I live on the east side of Center City, and the hospital is on the west side; a little over 2 miles away.  It is a pitiful distance to drive a car for three reasons; 

1) It is only TWO miles, 

2) We have great public transit in the city, and 

3) Once I find a parking spot by my house I DO NOT leave it!  Not unless I’m going out of state or getting big stuff from The Home Depot or something.  Seriously.  Parking around here is horrible.  If I drove to the hospital every morning, I would spend every afternoon circling around for hours looking for a new spot within a mile of my apartment.

So I always get a little peeved because the hospital receptionists always ask to validate my parking ticket, but I don’t drive to the hospital, I take the Subway.  The Subway is cheaper than it would be to pay to park, so I see no reason why it shouldn’t also be subsidized.  $2.25 per ride (X) 2 –there and back—(X) 5 for every weekday (X) 7, for every week of treatment…that really adds up for a person who is too busy being at the hospital and feeling lousy to earn a wage.

Ergo, I began using my powers of suggestion, which sounds a lot like whining…I’m sorry to admit…and telling everyone who would listen that they should give tokens to patients taking the Subway or Bus!  We mass-transit-folk save room in the parking garage, save the valets some headaches, and save the environment!

After running this spiel several times, finally my AWESOME hospital social worker actually listened to my crabbing and she helped me secure a transportation grant from a local nonprofit organization, The Breathing Room Foundation—they bought me a ton of Subway tokens!  HOORAY!

They even gave me some additional funds to buy a train ticket to be with my hubbie in Connecticut for a nice weekend.

They also gave me a hand-sewn bag with things to help me out while at the hospital, like cocoa butter for my burns from the therapy, a word puzzle book for sitting endlessly in the hospital, tissues for when I cry (which is thankfully becoming less frequent), and a really sweet card that made me choke up.  Such a nice gesture from a lovely organization.

As you can see, this is a nonprofit to help serve people affected by cancer.  Which begs the question, Do I Have Cancer?

In the very recent past, the answer was No.  But kinda yes.

I’m here to tell you that the answer is now Yes.  But kinda no.

To explain, I think it would be illustrative to share some of the evolving things that doctors have been parroting into my ears over the past several months.  Medical professionals, please take note—you are dealing with people’s LIVES here.  It is their life, and they ought to know the truth about it, even if it is a bitter pill to swallow.  As hard as it may be for you to say it, I’m telling you that it is even harder to hear different things from different people. 

Just be honest. 

That’s a principle that applies across the board in life, and it also applies here.

In fairness to my doctors, I’m a really oddball situation.  A dear friend of mine at an Ivy League medical school recently told me that he just took a special course on Neurology and that they didn’t even cover my type of tumor because “You will never come across this in practice.”  SURPRISE!    Here I am!  Coming across!

~~

March

-You have vertigo, take these pills and do these maneuvers- they will help.

May

-You have vertigo, but stop taking the pills and doing the maneuvers- they will make you worse.

June

-It will show nothing, but lets have you take an MRI.

-There are abnormalities on your MRI.

-There is something there…we don’t know what…worst-case scenario it is a tumor.

-We can’t know for sure if you have a tumor until we get in there.

-We don’t need to get in there to see that you definitely have a tumor, but it is slow-growing and benign and will never come back if we remove it.

-We can take the tumor out if you want, but your surgery is ELECTIVE at this point!**

July

-Umm…about that tumor being benign…we’re making you an appointment with an Oncologist, but we’re not gonna say anything more than that (most terrifying phone call of my entire life).

-So yeah, your tumor was actually fast-growing, not slow-growing, and it’s not the most benign tumor in the world. (Direct Quote)

-Your tumor was malignant, but you DO NOT have cancer.  The tumor will probably try to grow back in the same exact spot.

August

-I don’t know who told you that you don’t have cancer, but I disagree.  You DO have cancer, the cancer just isn’t likely to metastasize to other parts of your body. 

**This is my favorite one from a surgical resident.  He claimed that my impending surgery was “elective” and could wait.  Okay, lets imagine that I waited one measly little month, just to think about it.  Later docs realized that my tumor was capable of doubling its size every ten days.  So 30 more days would have brought me from one lemon in the head, to 8 lemons in the head…AKA skull-cracking death.  How’s that for elective, Mr. Resident?  Pardon me, but I respectfully disagree.

~~

August was when I first talked with my Oncologist.  That was the first “you have cancer” conversation.  Perhaps the old expression may ring true, that everything is a nail to a hammer, and he is a cancer doctor after all.  But whatever label you put on my poor, stupid brain, it needs to at least be treated like it has cancer at this point, because we want to pulverize any possible lingering mutated cells who could decide that hey are lonely and want to make friends.

So there it is, the C-Word. 

Cancer. 

One of the most prevalent, confusing, and resilient diseases in modern medicine— striking at will among the young and the old, the strong and the weak, the healthy and the troubled.  It took me about a week to even say the word out loud after that first conversation with my Oncologist.  It felt uncomfortable and foreign rolling around in my mind and evading the tip of my tongue.  I still don’t like to talk about it.  But there it is.  Even now it makes me clam up.  So I guess that will have to be it for now; more to come as I learn more, experience more, and accept more.

http://breathingroomfoundation.org/