After that bone marrow biopsy, I didn't wear anything pink on days coinciding with doctor's appointments.  The next time, I went back to the doctor he said that the bone marrow biopsy was consistent with a diagnosis of Hodgkins, but he wanted to be absolutely sure.  He also wanted me to have a second biopsy of the swollen glands/tissues in my neck.  My smiled turned upside down instantly.  "What?" I was very snappy at this point.  "Why do I need to have another biopsy?" I asked.  My doctor told me that he wanted to be absolutely sure and wanted to see if the surgeon could biopsy a larger tissue sample.  At this time, he was also recommending that I have a mediport inserted. I listened to him, but went home with much to think about. 

The very next day I was in search of a second opinion.  I have heard about and read stories of patients who underwent unncessary surgery and I was not about to be one of them.  I did my research and went to my healthcare provider for a referral for the second opinion.  I built a one-on-one relationship with the professionals at the outpatient facility that I had been visiting.  They really wanted me to get the best care and were instrumental in making that happen for me.  I was given the name of a physician in Brooklyn, Dr. Asha Nyak.  The practitioner even called and made the appointment for me.  I just had to show up.  I showed-up for my appointment armed with all of my documentation and a head full of information and questions.  I was instantly put at ease when I met the doctor and she shared information about her background with me.  She has a wealth of experience with Hodgkins and told me about her patients, with a similar diagnosis, who are doing very well.  She understood everything perfectly and wanted to have her pathologists review my films.  She was very thorough and wanted to review all of my information first-hand. 

I left her with my papers and films and she said she would contact me within the next week.  She did follow-up with me and scheduled another appointment.  When I made my return visit, she simply said, "Let them do the second biopsy."  She and her pathologists were in agreement with my Oncologist who wanted a larger tissue sample to be 100% sure of the diagnosis.  I thanked her for her diligence and went about the business of making the appointment for the second biopsy and mediport insertion.

The bone marrow biopsy was painful and a bit humbling, let's say.  I required two doctors to perform this procedure.  The humbling part was having to strip from the waist down and lie on the examination table sans panties.  It was quite a cheeky scene (if you know what I mean).  I was given a local anaesthetic to numb the area, but it wasn't enough.  The doctors couldn't have anticipated how strong my bones were.  Hell, I had no idea either.  I just know that they kept saying, "You've got some very hard bones."  It reminded me of a time when someone referred to my teeth as "great choppers."  Yes, it's all true.  I couldn't make this up if I tried. 

I could feel the needle scraping the inside of the bone in my lower back.  I held onto the pillow for dear life and may have even bitten into it a time or two.  I know what you're thinking.  No, I am not writing for a smut mag, but this was the scene.  I silenced myself for as long as possible until the pain was insurmountable and intolerable.  I let out a high pitch yelp!  That's when the doctors gave me the second dose of anaesthesia.  They were very apologetic, but they couldn't do anything except continue.  After what seemed like an eternity, it was over.  The doctor covered the insertion point with a couple of large bandages and told me to take my time getting dressed.  I lay there for a moment and slowly got up to put my clothes back on.  I had a great deal of soreness and was a little bit stiff, but all-in-all, I felt ok.  I left the doctor's office and was joined by my doctor on the elevator.  I guess I was his last patient as he had changed into his street clothes. 

I proceeded to walk north toward my favorite lunch spot, Spice.  This was convenient as I was already in the neighborhood.  I called my guy as I was walking and gave him a progress report.  I started to feel a little dizzy as I was walking, but I continued on.   That's me...always going, going, going.  I had my usual Thai lunch and then had to head back across town for another doctor's appointment.  I don't even remember what the second appointment was for.  As you can imagine, I had a pretty full day.  I left and headed for the train home.  I slept all the way to my stop and was ready for even more sleep when I got home.  On this particular day I was a vision in pink.  I had a beautiful pink pleated skirt overflowing with floral patterns and a cute, yet classy pink tee to match.  My first action item when I get home is to disrobe and today was no exception.  When I headed to the bathroom I felt a wet spot on my lower back area.  I looked in the mirror and saw that my stark white briefs had been soiled with blood.  The blood had soaked through the bandages, my underwear, and probably my skirt.  I quickly examined my skirt and found traces of blood there as well.  I instantly reverted back to the body of a 13 year-old girl who had just started her menstrual cycle.  My mind was filled with thoughts racing through my head.  Who had seen me?  What did they think?  I was so embarrassed even though I was home now.  On one hand I had dodged the bullet because I didn't know that I had the stain, but that didn't really make me feel better.

This was one of the first in a series of long days and I was determined to put it behind me.   All I wanted to do was sleep.  I changed my clothes, crawled into bed, snuggled with my Winnie, and went to sleep. 

Just about everyone in this country and abroad knows that America's health care system is in dire straits.  According to reports, there are an estimated 40 million uninsured in this country and it's completely unacceptable.  One of the root causes of the situation is that we are in the "business" of healthcare.  Hospitals, doctor's offices, laboratories, pharmacies, etc...all act like a business.  Often times when people are in need of these services, they are thinking and acting on emotions.  They have a condition that is affecting them physically or mentally and they are looking to care providers to respond to their needs as people, not numbers.  

Finding the right doctor was a very time-consuming, frustrating process.  I was armed with a list of numbers given to me, my health-care provider directory, and my diagnosis.  I was given the names and numbers of four oncologists, none of which could/would see me.  I received responses ranging from, "That's not the doctor's specialty; The doctor is not seeing new patients; and the classic...The doctor doesn't accept your insurance."  That is where my insurance plan's provider directory came in handy.  I let my fingers do the walking through that book like it was the Yellow Pages.  I called on every Medical Oncologist I could find until I received a YES.  What's ironic is that many of the doctors I called on work at the facility where I would eventually be treated.  Prior to finding my oncologist, I had been told that I would need to be treated with a combination of radiation and chemotherapy.  It was this information that led me to a Radiologist, Dr. Sad.  I was referred to Dr. Sad while massaging my provider directory.  His office was in the Cabrini Medical Center in the Union Square/Gramercy section of Manhattan.  When I went for my appointment, I wsa a bit skeptical.  Cabrini does not look like hospitals you see on Grey's Anatomy or House.  It is a throwback to the '70s, not to mention the radiology department is in the basement and intake is in a back corridor near the facilities room.  Nevertheless, I shook it off and proceeded to see the doctor.  The office was really funky and eclectic.  There were hanging photos of Henry Kissinger, Indian temples, sketches of the Eiffel Tower, and a host of other artwork mounted in gold ornate frames.  Even the nurses seemed old school and were using manual devices.  I was finally reassured when the doctor came to see me.  He had a real presence, all 6'3" of him.  I could immediately sense his knowledge and urgency he felt.  He didn't need any high-tech gadgets to know what I needed.  He performed an old school diagnosis with his hands placed firmly on my neck and chest.  He understood my diagnosis fully and told me that radiation was not what I needed.  It would not help me, but chemotherapy would.  I was relieved and dejected at the same time.  I had this teeny tiny hope that I would be able to get away with a prescription for radiation only and be good.  Dr. Sad is a radiologist and he told me that I needed to see the Medical Oncologist, not him. 

I finally found ONE Medical Oncologist who agreed to see me and had acute knowledge of Hodgkin's Lymphoma.   Again, his office did not look like Seattle Grace.  It resembled an old, cluttered library.  I was somewhat reassured because there were other patients sitting in this small waiting area and they seemed to be regulars.  Shelly, the doctors secretary, had a wonderful attitude.  She welcomed me and it felt genuine.  She had been working with the doctor for quite some time so she knew the routine...old school:)  Finally, it was my turn to see the doctor, Dr. Ruvolo.  I met with him, he examined me, got a second opinion from his colleague, and we decided that it was time to get started.  Dr. Ruvolo gave me a list of tests that I would need, the first being the PET/CT Scan.  Although he had my paperwork and the diagnosis, he needed the x-rays to see what was going on inside my body.  In addition to the list of tests, I had other running around to do.  I had to retrieve the films from my biopsy so that the doctor could have his pathologist review them.  The initial review had been done by a pathologist at another hospital and the doctor needed to see them.  All of the criss-crossing around the city definitely kept me on my toes and kept my mind occupied as well.  All of the tests have their own story and typically aren't too painful with the exception of the Bone Marrow Biopsy.  This is done to test my bone marrow for cancer and no one prepared me for the type of pain I would endure.  I thought that it would be relatively quick and painless since in was an in-office procedure...Boy was I wrong! 

Tears aren't my thing.  I've never been a crier on the outside.  I just shake it off.  I didn't cry again for months.  I am a very emotional, compassionate, sympathetic and empathetic person, but when it comes to me, I've got to be strong.  The day of my diagnosis was the end of one journey and the beginning of another.  I cried on that day because I was tired.  I had been dealing with the pain and questions for so long and I finally had a diagnosis.  That had been the easy part because I knew what I needed to do.  Just as quickly as the tears came, I wiped them away. I think of Anita Baker's "No More Tears."  There was no time for crying because I had work to do, but before I could get to work I had to address the hardest part...telling my Mom.

Anyone who knows me knows my Mom.  Although you may not have met her in-person, you have a vivid picture through knowing me.  My Mom is a constant in my life.  Everyone has a mother, but not everyone has a best friend.  I have both in my Mom.  We are definitely the Dynamic Duo!  I've been close with my Mother my entire life.  She's carried my weight and she's been there for all of the BIG things in my life.  This time would be no different.  Even though she's my Mother, I have always been protective of her as she's had plenty to deal with and although she may come across as tough, Mom is very sensitive and I am aware of that.  My Mom is one of 15 children so you would think that she's seen just about everything, but being a sibling is different from being a parent.  I had to figure out how I was going to break the news to her.  I went back and forth in my head and I finally decided to just share as I had always done.  I was very anxious about telling Mom and when I did she didn't take it very well.  I half expected this and just had to let that be.  I did try to reassure her just as the doctor had tried to reassure me, but she needed time to digest this information just as I did. 

I didn't know everything, but what I did know was that I had to get on the ball.  I had to start researching Hodgkins Disease and doctors.  Hodgkins Disease is also known as Hodgkins Lymphoma.  It is a cancer of the lymphatic system which is part of your immune system.  My surgeon told me that I needed an Oncologist and I had written that down along with some numbers.  I didn't even know what an Oncologist was so my first order of business was to look that up.  Oncologists are those doctors who specialize in the study of cancer.  This was key!  I needed a Medical Oncologist, not just a primary care physician.  I  was now about to become entrenched in the black hole called health-care.

I had to wait about one week for the results of my biopsy.  During that time I just remember thinking, "Why did the doctor ask me those weird questions?"  When I had first gone to see the surgeon for the biopsy he asked me two questions:  Have you been sick?  Do you have a cat?  I know what you're thinking because I was thinking the very same thing...What in the hell does a cat have to do with my neck?  (Remind me to tell you what my Mom said when I was first complaining about my neck back in '06).  I answered "no" to both.  I was the picture of health.  I had just had a complete physical two months prior which had been A-ok.  Other than the occasional, miserable winter cold and pain in my neck I was fine.  You are talking about someone who has never had a cavity or a broken bone.  I really pride myself on the cavity thing!  I couldn't explain this lump in my neck or the pain surrounding it, but I had hoped that he would find the answer so I could get back to the business of being Daphane. 

When I went back to the surgeon for my results, he confirmed that I had Hodgkins Disease.  He immediately when into reassurance and appeasement mode not realizing that I had no idea what he was talking about.  He asked me if I had any history of this or cancer in my family.  I know, you may think that I had made the connection, but I just didn't.  The doc proceeded to tell me that Hodgkins was a type of cancer, but the most favorable.  He said that if you're going to have cancer, then this is the one you want because it's treatable and the survival rates are in the 95-98 percentile.  Survival?  Was I supposed to be thinking about death?  I was sitting there trying to spell Hodgkins.  No joke!  That's how my mind works.  And that same mind briefly left the room, but returned with a quickness.  I could see the sadness in the doc's eyes all the while he was reassuring me.  I just kept nodding as if I understood everything he was saying and kept a smile on my face the whole time.  I know that I wear my emotions on my face and I was very conscious of that.  I felt like I had to reassure the doc that I was ok even though I wasn't on the inside. 

I left that office and  headed toward the street.  It was a beautiful sunny day with a nice light breeze and it felt familiar.  I felt similar on 9/11/01.  The same type of eery quiet came over me and just as I had walked calmly and slowly from 47th Street to 125th Street on that day, I began to walk from 14th Street to 42nd Street.  I took my sunglasses out of my purse and covered my eyes.  I am not one who usually wears shades for a number of reasons, one being that I forget that I have them, but the most overwhelming reason is that I don't want to look too cool!  I know, I'm very unique in that way!  On this day, it wasn't about the sun or even being cool, it was to hide the tears that were streaming down my face. 

Lee was sharing his story with me in his "Lee way."  He was sharing information and a part of himself that he may not have shared with everyone.  It did feel good to know that Lee would feel comfortable enough to share his story with me.  I could not have known that a short while later, I would be sharing a very similar story with Lee. 

You see, I had been feeling strange.  I had experienced issues with my neck on and off for quite some time.  Actually, let me back that up...I had been going through it with my neck for years!  I had been to see physical therapists, massage therapists, psychotherapists and chiropractors.  This is all true with the exception of the psychotherapist while I do believe that some of the therapists thought I needed to have my head checked.  The most recent incident with my neck had taken place one year earlier, in 2006.  I had been on a skiing trip in Colorado and two weeks later I felt the effects in my neck.  I had taken some serious tumbles while snowboarding, but being the stellar athlete that I am, I just shook it off and kept going.  So, when I experienced a headache so severe that it felt like a migrain and kept me from moving my neck, my first thought was to head to the chiropractor.  My chiropractor thought that I had a concussion and told me to go to the emergency room, which I did.  The emergency room was a complete joke.  After a few hours, a pitiful exam with no x-ray,  and the conclusion that it wasn't meningitis, I was sent home with a prescription for Naproxen.  The pharmacy had closed by the time I was released so I headed home.  I knew that Naproxen was a muscle relaxer and there was Naproxen in my pain reliever of choice, Aleve.  I took a couple of Aleve capsules, went to sleep and I felt 100% better when I woke up the next morning.  It was like a miracle.  The pain had completely subsided and I could see straight and think about what had happened.

Throwback to the night before...Remember when I said that I went to see my chiropractor.  Well, before I did that, I called my very good friend and former colleague who works in the same building and shared the same chiropractor.  I expressed my intense pain and told him that I was going to see her.  He said that he could meet me after my appointment with her.  Mind you, I hadn't seen him in a quite a while and when I did I was in excruciating pain.  His solution was for me to come have dinner with him on the Westside.  I, being completely selfless and stupid, agreed to go with him and, as usual, we had to dine somewhere close to his apartment and stop by the apartment so he could drop off his things.  By this time I was in so much pain that there were tears streaming down my face uncontrollably.  This wasn't emotional crying, but pain so severe that it was producing tears.  He saw this and proceeded to say, "Let's go and get a drink.  You'll feel better."  I believe that I was truly out of my mind and the pain had altered my senses.  We went to the restaurant where I did have a drink that seemed to ease the pain a bit while my friend trolled the restaurant for attention in the hopes of finding a date.  There was never any concern for me.  After dinner, we parted ways and if I recall correctly I told him that I was going to the Emergency Room.  He just told me to call him.  He didn't bother to walk with me or volunteer to come to the ER with me.  As usual, I did it alone.  I walked there ALONE, sat and waited ALONE, was treated ALONE, and returned home ALONE.  I know what you must be thinking about the friend and you are right.  I think the same thing...NOT a friend.  

So, I was never diagnosed and life went on until those symptoms came back.  I had the recurring issue with the pain in my head and neck.  I thought that I had a pinched nerve and I had gone for a complete physical.  Physically I was fine, but my doctor recommended physical therapy for the pain.  I had one session of physical therapy before I started traveling.  I was hitting a few cities:  Cancun with my Mom, LA with friends, Oklahoma for family.  It was when I was in LA that the pain became intense again.  I had even started thinking about acupuncture again.  While having some white wine with friends, I was experiencing pain when a friend told me that she had experienced the same type of pain in her neck.  She said that I had to stop carrying the bags on my shoulder and I would have to change my lifestyle completely.  I thought that she must be right.  Looking back I think that I was just so happy to know that someone could relate to my plight.  When I got back to NY I still had the pain and now there was a visible swelling in my neck.  I asked a friend to confirm that she saw what I was seeing and she did.  I called my doctor ASAP.  When I went to see the doctor she confirmed that I did have a swelling at the base of my neck in between my collar bone and shoulder.  She referred me to a surgeon for a biopsy.  I told Lee about this swelling in my neck and my impending biopsy.  He said, "Daphane, that's not good."  I could see the look of concern on his face, but I was stoic and told him, "It'll be fine."  He retorted with, "It's not fine."  And Lee was right.  It wasn't fine. 

In my earlier posting I had mentioned my friend Lee.  Lee is the one person who knew exactly what I was going through.  I met Lee at work.  I had actually heard so much about Lee before I ever met him.  Apparently Lee had been gone for a while and was coming back.  There were all of these boxes in front of Lee's office for what seemed like an eternity.  No one knew exactly when Lee was coming, but it was obvious that he was to be expected.  People always spoke highly of Lee then as they still do now.  I had heard how much fun it was to have Lee around and I was looking forward to meeting the man, the myth.  So let me tell you how I met Lee...I was walking down the hallway and there was this tall, bald, pleasant-looking man walking my way.  I knew it was Lee.  I made some simple deductions.  He was on my floor, walking toward my area and I had never seen him before.  It made perfect sense in my mind and every bone in my body agreed.   So, I walked right up to him and said, "Hi!  Are you Lee?"  I could tell that he was a bit taken aback and pleased at the same time.  "Yes, I'm Lee, " he responded. I proceeded with, "I knew it was you.  I have heard so much about you."  He smiled and said, "Ok."  I told him how happy I was to meet him and that I'd see him later.  I had such a good feeling about Lee.

Over time, Lee and I became very good friends.  He and I developed this relationship or sort of camraderie.  We could talk about any/everything and we would.  Sometimes Lee and I would talk for hours and only stop because we had work to do...at least I did!  Just kidding.  Lee is a very intelligent, hard-working, accomplished man.  Everyone enjoys working with Lee and he is always such a wealth of knowledge.  I didn't know why Lee had been away.  I believe he may have been away from the company for two years or longer.  I had never asked why, but I knew that I would learn about that someday.  That day came we learned of the passing of veteran journalist, Ed Bradley.  Ed Bradley had succom to a battle with Lymphoma.  I knew hardley anything about this disease.  I think I knew that it was a Cancer, but that was the extent of my knowledge.  It was then that Lee shared his story with me.  Lee told me that he had been diagnosed with Lymphoma.  Lee told me a bit of his story, but not all of it.  He told me about some of his symptoms and how he was diagnosed.  You are going to be seeing some of the same information here again because Lee repeats sometimes:)