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Friday, September 19, 2008

I am not a doctor but I play one on TV

I have raved a little about Sloan Kettering but basically if you dont know what it is, it is the number one cancer hospital in the country and maybe even the world. They have saved two special people that I know with the most rare cancers and that makes me believe that they are the best.

I am sure people have had experiences that make them believe that it may not be the best cancer hospital but I have to go on my own experience and it has always been amazing.

Except of course for the long hours of waiting and the fact that when you go there you have CANCER!!

So Hubby was diagnosed with Synovial Sarcoma in 1993. He had two fingers amputated on his left hand and he went to Sloan Kettering every 3 months for the first couple of years for checkups. Every time we saw Dr. Boland.

Doctor Boland is a tall white haired man with a thick Irish Brogue. As far as I am concerned, he is GOD. He is the rare type of doctor who cares, really cares. He sits down in the room when he comes in. He tells the truth. Good, bad or ugly.

So sometime during the first couple of years following the initial diagnosis, Hubby finds a lump in his shoulder.

Diagnosis at original detection... cut it out from wherever it is. If you can cut it out then its ok, fingers, arms, legs, feet ok

neck, hip, spine. death sentence.

Shoulders not so sure.

Dr. Boland, GOD, told us that most likely if the cancer came back it would be in his lungs. So he had a chest xray each time.

And when it came out fine... we went to dinner in Manhattan.

We discovered Brother Jimmys, which no joke has a flashing neon sign that says
Meat/Eat right over the neon pig. The floor is made of plywood and there are rude signs everywhere. But it has the best ribs you could ever eat, with mashed potatoes and corn bread and the most giant mind eraser drink you could ever want. It has a giant plastic shark sticking out of the top and is served in a fish bowl.

So now there is a lump in his shoulder and we are freaking out. For real because again shoulders, not so sure. He has learned at this point to do most things without the fingers but if he has to have his arm amputated past his shoulder, his career as an electrician is over. And hopefully just that and not his life.


So we make an appointment to see God and they take our calls like we are old friends because being one of only 8 people in the country with this cancer in this spot, we are kinda famous,

That and the fact that we used D3 as entertainment.

We get an appointment right away and we go in and Dr. Boland is really nervous. I can tell he thinks it may be back.

He comes in, examines Hubby, leaves, comes back, leaves again.... brings in someone else... leaves, comes back later and is like ok come with me.

We trust him, so we follow. He tells us that because we come from so far away and because he wants to take care of this immediately he wants to take the lump out and biopsy it. now. today. this minute.

He is not really supposed to do this so we are sneaking into an empty surgery room downstairs.

I am not kidding. We are looking around corners and sneaking around.

We go into the surgery room and he has an assistant and he is like Nancy come on in. So being completely obsessed with medical procedures I go in.

He has the assistant prepare his shoulder and then asks the assistant to go get something.

Now we know why the wait for Dr. Boland has sometimes exceeded 5 hours. 5 hours like as in our appointment is at 10am and at 245 we are called into a room.

We laugh when we hear first timers after 30 minutes of waiting say "Um I have been waiting for a half an hour, how much longer is it gonna be?"

Fact is... when someone is saving your life, you wait. With a smile.

So I am in surgery...

and Dr. Boland begins to cut into his shoulder.

he pauses.

"Where are my glasses?"

Nancy can you look in my jacket hanging on the back of the door?

I take out his glasses and he is like

I am already sterile Can you put these on me?

So I start to put his glasses on and he is over 6 ft and I am standing on my toes and poking him in the ears with the glasses and he bends down and I think...

this is a story I will tell for years.

So he takes out what appears to be a new tumor.

He puts it in a jar.

Nancy can you get me the anesthesia.

What???

Yeah take that needle and stick it in that bottle and pull down and fill the needle up with blah blah blah. Then bring it to me.

He shoots him up with blah blah blah.

He leaves.

He comes back in and says "I am not sure". He leaves and comes back. He stitches Hubby up (like Frankenstein)The scar is gnarly. And he says "It may be back". We say okay. He says "Well it has irregular margins but you never know" "Well if its back we will have to amputate.... well lets see."

They stitch him up, shoot him up with anesthesia, give him a prescription for pain killers and send us home. We took the train and two subways to get there so guess what?

We have to take 2 subways and a train to get home.

So we go to Genovese to pick up the drugs, give him one and get on subway 1.

Now Hubby is bandaged and drugged and we get on the first subway and I am trying to shield him from the crazy New Yorkers.

And he is getting more and more drugged and I am not sure how to get back...is it the 6 train and then the E train? or the other way around? Do I get off at Lexington Ave?

We finally get back to the Ronkonkoma train station and we own a pickup truck that I have to drive home.

Princesses dont drive pickups.

I guess they do surgery though.



Ps. They called about two weeks later and said it was an infected hair follicle that turned into a fatty mass. but no cancer. I remember hearing the messages and falling against the wall and feeling so greatful. I try to remember that feeling of gratitude in times of stress.

Like when Hubby is snoring.

2 comments:

KhoolhandZ/JP said...

Great story and I'm very glad the lump on your hubby's shoulder is benign.

I too am a Synovial Sarcoma survivor, got diagnosed back in 2004...metastesized in my lung November 2007, and since my thoracic surgery have been mets-free, thank God.

It's always great to read other's positive experience.

KhoolhandZ

Nancy said...

hey khoolhandz,
where did you first find the synovial sarcoma? where are you being treated? let me know, we havent really come across anyone else with synovial sarcoma in the same spot. Keep in touch you can email me at mrsbeasley123@yahoo.com