2005, The Year from Hell! (Part I)

After the “incidental finding” that I had a tumor under my left shoulder-blade, I started a series of attempts to diagnose the tumor correctly. Of course, it was just another benign tumor, one of those scares, when one sat staring at the ceiling all night and prayed, and God listened and then everything was going to turn out just fine. The first shoulder expert, at one of Philadelphia’s renowned Institutes, after taking his own x-rays and studying the MRI from The University of Pennsylvania, told me I had tendonitis…

“Tendonitis?” I dared question. “The MRI showed a tumor…”

“No, you don’t have a tumor!” The expert assured me and smiled.

Probably, if I hadn’t spent half my childhood forced to sit in a doctor’s office, and if I didn’t have the unfortunate experience when Natalie was misdiagnosed, I would have walked away.  But the truth was my trust in the ultimate knowledge of medicine had been shaken and I dared say:

“Doctor, just for my peace of mind, would you please consult the hospital radiologists as well, I am very scared. I am a single mom, I really can’t afford to take the slightest risks to… die.”

The doctor looked at me puzzled, and he was probably so shocked that he agreed to my request.

It was Christmas Eve of 2004 when my cell phone rang as I was driving down Cheltenham Avenue, passed Willow Grove Ave. Yes, I did answer the phone while I kept driving, and I do know it is dangerous, and yes, I wouldn’t recommend that anyone drives and talks on the phone at the same time, but that one time, I did answer the call…

“Hello, this is Dr. X how are you feeling?”

Oh, he is super nice, he, the busy doctor, calls me in person… again, all the signs the news was not good!

“Do you have any news for me? I plunged past the formalities, as I turned left onto my street.

“Yes… nothing to really worry about but the radiologists think you should consult an oncological surgeon… just to e safe…”

Did I tell him good-bye, did I tell him f— you? I definitely hand up as I unlocked the door and collapsed on the couch while our dogs still hoped I’d let them out.

I made an appointment with an oncological orthopedic practice in Philadelphia and the doctor recommended a needle biopsy. I was worried about the needle biopsy. The tumor was under my scapula, how was the doctor going to reach under such a bony area? And was there a danger to spread if the needle didn’t go in the right spot and…

and the truth was I had no choice and I had to have a needle biopsy.

It was scheduled soon after, the doctor’s office made the request, another bad sign! The doctor scheduled to perform the procedure was a younger-looking, happy looking fellow and he assured me the procedure was an easy. As I was half sedated and being taken into an elevator to the operation room, I saw a young beautiful female doctor who was escorting me. Her uniform was dark blue, just as the other doctor and I slurred:

“Why do you all wear darker uniforms, what happened to the white uniforms doctors always worn?”

“White shows everything, but see, right here, it’s blood and it doesn’t show!” She explained pointing to a large spot on the front of her dark-blue uniform.

Her explanation was very reassuring indeed, but I was so out of it I started to giggle. At the time it seemed funny, but in retrospect, I’d rather see doctors with white, spotless uniforms.

The procedure room was small and to my amazement in the room, in addition to the doctor and two nurses there was a pathologist with a microscope. I think, it was a microscope.  The needle went into my shoulder once… nothing… twice… at least I was numb and still happy.

I lost count after seven stabbings and now I was feeling the pain. I looked at the pathologist. She had a puzzled look imprinted on her face. I wondered if she saw something very bad or nothing!

At last the procedure was over. They assured me I’ll have the results very soon.

Two weeks later, I was still calling the doctor’s office asking for results. Yes, I am persistent! At last, after two weeks the result came “non-conclusive.”

“What does this mean? Is it malignant or benign? Non-conclusive meant just that: They didn’t know.

I was now really worried, as the type of cancer I was suspected of was rare and those were to the best of my knowledge the only oncological orthopedists to specialize in it.

I went to work preoccupied by my tumor and disoriented. My first client that afternoon was a woman who suffered from cancer and who was well-informed.

“Why don’t you go to Sloan.” She suggested.

Sloan? I thought. Sloan was a large car dealership in our area… why was she sending me to Sloan!

“Why, I dared ask, “Did Mr. Sloan have cancer?”

She looked at me more than surprised, I don’t even want to express in writing what I think she thought of me.

“No, I mean Memorial Sloan Kettering Cancer Hospital in New York City!”

“Oh, that one!” I responded pretending I knew what she was talking about and making a mental note so I could check it out and Google it later.

And I did, and marveled at my own ignorance for not knowing about it sooner. Oh, it looked just like what I needed, and thank good Kevin kept us on his Blue Cross insurance and I would be able to go there!

I dialed none less than the head of Oncological Surgery at Sloan (not the car dealership).

A pleasant woman answered on a second ring. A good sign, a human and she picked up!

“Hello, I am calling from Philadelphia and…”

I told her briefly the whole long story.

“And who is referring you?” She asked routinely.

Who was referring me? … me!

“I am referring myself.” I stated, and expected her to give me a story about how to get an appointment with Dr. John Healy I needed to be refered by another doctor.

“Okay.” She said. “He has a cancellation next week…”

When I told my friends I had an appointment with one of the best oncological surgeons in the world, Dr. John Healy, my friends didn’t believe me. Some told me people waited up to six months to see him. I heard stories of him never leaving the office until he saw all those waiting. Many times he worked passed mid-night. He was the best of the best and he cared!

I investigated the cheapest way to get to New York and the Chinese bus would have been the cheapest, but it would have left me in an area far from Sloan Kettering. I opted for Grey Hound and learned how to get the e-deals print it yourself deals!

Dr. Healy examined the MRI and simply said:

” The tumor looks suspicious, it needs to be excised.”

They scheduled me for surgery in March. We started preparations. Nick and Cass lived now in the Palisades and the surgery was scheduled right before Easter. We made plans how the girls and I would come to New York and after the surgery I would recover at Cass and Nick’s house. I couldn’t think of a nicer more relaxing place. A beautiful home, with faithful friends and the bonus of looking out my window and seeing the Hudson.

We were all sat, but it was February and as I was battling the needle biopsy, inconclusive pathology and still trying to assure my girls everything was alright, Kevin was nowhere to be seen and the child support payments established by the courts according to his income weren’t coming. The amount the Courts told him he owed his children was more that my $836 a month. I found out the Courts used a “grid” and it was all fair and mathematical, a simple, established method to determine what a parent must contribute to his or her child’s daily needs.

But Kevin was not paying the child-support and now in mid-February we had a court date! I had never been in Court prior to that date and I had a slight feeling that I might vomit… no my vomiting would certainly not make a good impression.

Our turn came at last, and my lawyer, myself and kevin followed a clerk who directed us into a small room crowded by tables arranged as a T.

Kevin declared he had a job at the time the child support was established but now he doesn’t and he also when asked about the health insurance which was a family policy in his name, he simply said:

“I dropped it!”

“You dropped the health insurance policy without having the courtesy to tell me, when you were receiving all the statements, you knew I was going through tests and I might need surgery, and you dropped the coverage for your kids and me without telling us?”

The mediator was stunned and tried to keep her composure.

“Sir, why did you drop the coverage without at least notifying your wife?”

“There is no law to make me keep my ex and kids on a health insurance policy!” He said, and that was the first time in years that I detected emotion in his voice. 

It wasn’t a good emotion, it was the triumph that he managed to hurt me, and the spark in his eyes, the triumph in his voice made me cringe.  I looked at his face and examined his every feature, his mouth, his eyes, his skin… what was wrong with his skin, it looked as if he picked at it, it looked different from what I had known for so many years.

“Sir,” Continued the Mediator, “You are under obligation to provide health insurance for your family, and the divorce is not yet final.”

“Fine,” He said, and mentioned an obscure health insurance company, a coverage most of the doctors I was seeing wouldn’t take.   

The session at the Courts ended up in confusion, with the Courts giving him another few months to come up with the payments for child-support. I, on the other hand had to stay on the insurance we already had which was accepted by Sloan Kettering where I had scheduled my surgery.

I called the insurance company and we were still in the 30-day grace period. 

“How much was the premium for the kids and I, if I opted to change it to an individual family policy?”

Almost $900 a months! That was a little less than my mortgage… so this was when the ride down into the basement of poverty started. I cashed in some of my pension money. My friends Cassandra and Nick started helping me financially again. I was embarrassed that I needed help again, but when one is that desperate, I guess pride is crushed somewhere in the depth of one’s heart… survival was and will always be more powerful in me, and win over pride.

March 25, the day of the surgery arrived. A hard surgery, the tumor was under my shoulder-blade, but I really was in the best of hands… and immediately after the surgery even better news, the pathology done right after the surgery showed a benign tumor!

Such luck, I thought,  it will take me a couple of months to resume my work as a massage therapist and esthetician.

As I recovered in Cass and Nick’s surreal home hanging over the Hudson I started calling my clients to line them up for May, when I was sure I’d be healthy enough to go back to work.

After a week of being in Ludington’s Paradise e the Hudson River, my friend, Kate, drove all the way from Philadelphia to pick us up. Kate was also a client, a beautiful person who I would always miss. She helped me, and probably many thought I’d be dead, but so it happened that in 2009 Kate died. I always wanted to thank her more for her kindness, and the stuff of life came in the way… now she is gone from this dimension, but who could be sure? May be, as The Flower of Life tought me, there are other dimensions and some time, in the future I will have a chance to really thank her. her spirit, I could still feel with me.

Two weeks went by quickly and when I went back to Sloan to be checked post-op, a younger, very pleasant doctor met me in the room.

“You already know the good news,” he said. “it was a benign tumor!”

Oh, such relief, I thought. All this fuss over a simple benign tumor. Then, a voice coming from me, but which was not mine, asked the doctor:
“Could I have a copy of the pathology report?”

“Sure,” he said, and left the room to make

me a copy.

I waited. And waited. And waited.

The copier must be far… I thought.

The young, friendly doctor came back at last

 He opened the door slowly. He was still reading the report which he was asked to bring in, and as he was reading, his smile disappeared.

By the time he sat down and looked me in the eyes, there was no smile left, but worry in his eyes.

“I have to tell you… they changed the diagnosis! This never happened before!”

I was not understanding. The room was spinning, my head was spinning. My whole life was in shambles!

“Please say it, do you mean it’s not benign, I have cancer?”

“Yes, a very rare type of sarcoma, hemangioperycitoma. It took a while for the cells to grow in the Pietra dih…”

I folded the report and placed it in my purse.

“How what? I asked

Dr. Healy came in and told me my cancer was so rare it was hard to detect and there was no follow-up with radiations or chemotherapy, this type needed to be excised and followed for a few years to make sure it doesn’t spread to the major organs, and the major organ in danger in my case, were the lungs! For five long years, I was to come to Sloan Kettering for check ups. First every six months then every year.

The reality of cancer, as I discovered slowly is that even in being diagnosed with a cancer type one could be lucky or not. There are the common cancers. For instance, the breast cancer, for which millions are raised every year. The type of cell most common is in the milk ducts. This is the type on which most research is performed because the greatest numbers of women have this particular type. However, if one is unlucky, to had for instance a sarcoma, which is rare among adults to begin with, than in addition a type of sarcoma cell rare among the rarest, then who is going to donate money to save ten people when one could contribute to more research to save the millions, affected by a common cancer.

My mother died from breast cancer. I never knew the type, the grade… my friend Susan died from a rare form of breast cancer, inflammatory…My daughters kept asking me to make donations for the races they ran for other types of cancers, and as I was giving my ten dollars I thought: “What about the cancer that affects me? 

Slowly, I was discovering that even when one is diagnosed with cancer, there is an element of “luck, but I was determined to survive regardless!

2 thoughts on “2005, The Year from Hell! (Part I)

    • I didn’t have symptoms. It was an incidental finding on an MRI (because I had a tremor in my right hand)
      I was misdiagnosed 3 times until I ended up at Memorial Sloan Kettering in NYC and had surgery.It was a very rare type of sarcoma.
      Please read the posts after the one you read or go to http://www.amazon.com/books The book is in epub/kindle and paper the title: The Gypsy saw two lives.
      I hope this helps, feel free to ask more questions if it didn’t
      I wish you well. Rodica

      Like

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