Wednesday, August 28, 2013

The Back Story - Part 1

Stop Hiding
I have decided to stop hiding from people. Over the past five months, I didn’t want people to know about my situation because this situation has left me completely helpless. I don’t like being helpless. People tend to feel sorry for the helpless. I didn’t want that. I figure I am trying so hard to stay alive that I ought to share that I AM alive. Writing about my thoughts and experiences for the living to read just proves that I am still here--or was--here which is important to me.    

For the first four months after hearing my diagnosis, I cried every day except for perhaps a handful. The profound reality that I may not be able to finish raising my children left me with enormous emotional pain. But, over the past few weeks I have realized that my life is not over, yet. I suppose that is what happens when you start to feel happiness again. Yes, my timeline is shorter than I had planned with three months or so about as far out as I try to go.  Those three months are the intervals between CAT scans telling me what the cancer is doing. Hey, the first one showed no progression, so I am good for another three! My treatments, as tiresome as they are, gave me three more months to enjoy my children’s smiles and to tell them how much I love them. Definitely worth it!

March 27 The Lymph Node
On this particular day, my brain begged for me to check my lymph nodes near my clavicle and neck area. I was afraid but finally made myself do it. When I found the lymph node at the base of the front of my neck, I knew what it was. I remember thinking I could now stop worrying about cancer coming back. It was back. In fact, it was never gone.  

March 28 The Pulmonologist
The next day, I had an appointment with my pulmonologist, Dr. C., for a check-up to see how the newly prescribed inhaler and an additional medicine were working for my possible asthma. Since I had found the lymph node the night before, I planned to ask the doctor to feel my neck. I did and to my horror he found two small BB sized nodes side-by-side beside my clavicle. I then directed his hand to the one I had found. His response was, “Well crap." Yeah, it is not good when your doctor says, "Well crap!" He immediately left the room to call my oncologist. 

Dr. A. was in his office that day and said to send me right over.    

My Oncologist 
Dr. A. poked his head through the door with the same demeanor he always has when I see him, up-beat and ready to tell me I was the healthiest patient he had.  He looked at me and said, "You're gonna be fine."  

I responded, "I'm scared."  

He left and then returned. As he felt the two nodes beside my clavicle he said, “Those are so small." Then he felt the one in my neck. Next he said, "You have always been the most perceptive of my patients," which only had to mean one thing. This was bad. He scheduled a CAT scan of my neck and chest. The appointment was made for the next day.

March 29 Friday
The CAT Scan
CAT scan-I didn’t even bother to ask the technician any questions. I was too scared and needed to protect myself from further harm.

Monday, April 1st 
The News
Doctor A. called me at 5:12 pm. Reese and I were on our way to gymnastics.

He said, “How are you."  

I said, “Not very well since YOU are calling me."  

He said, “Yeah, it is not good."   

After I said, "Oh sh**" twice, I asked, “Did you see the ones in my neck?” 

He said, "I am not concerned about those. You have a 2cm (he might have said 2-3 cm) lymph node in the area of the internal mammary nodes that I am concerned about. It is butted up against your esophagus. I need to find a pulmonologist who would be willing to biopsy the node since it is in a dangerous place." He then said, “Not really dangerous, just difficult to get to."  

I asked, "What am I facing?" 

He said, "Let’s get a biopsy of it first." 

The Biopsy
Dr. L., a pulmonologist, called me the next day late in the afternoon. I never experienced a call from a doctor before to schedule a procedure. He explained that his nurses usually do this but didn't explain further. It must have been a favor for Dr. A. He too had trouble telling me how big the node was, "Maybe 2 cm, maybe not that big," he said. He then explained that he was going to go down my esophagus and do a fine needle aspiration through the esophagus and into the lymph node. They would use ultra sound to see where the node was located. I asked him if he could biopsy the small one on my neck.  

He asked me, "Can you feel it."  

I said, "Yes."  

He then said he could not. I didn't ask why. 

He continued to give me more information. "A pathologist would be in the room to look at the cells. I will keep collecting cells until I feel there was enough evidence either way". 

I asked him if he could tell me the result of the biopsy that day. The conversation ended with me believing I would know the day of the biopsy if cancer was again trying to rob me of my life.

April 3
The biopsy was Wednesday. Dr L. was a young man with dark hair that made his blue eyes even more distracting. I regained my composure and we began our exchange concerning the procedure. As do all doctors that I have had, he came to speak to me before the procedure. 

He asked me if I had tonsils.   

I said, "No."

He said, "I thought you had your tonsils."  

I didn't inquire why he said that. In the end, it didn't matter.

 He left and a nurse came in and accessed a vein. I was then wheeled to the surgical room. As soon as the medicine was injected into my IV, I said, "I am starting to feel it", and the person beside me said, "Already?" That was it, I was out.  

The next thing I remember was waking up in the recovery room. I was so tired that I went right back to sleep. When I arrived home, I continued to sleep there too. 

Dr. L. never spoke to me about the results as I was lead to believe he would. I suppose I was too drugged to comprehend anything, anyway.  

Later my husband, Greg, told me that when the doctor spoke to him he said he tried to contact him after the procedure, but no one could find him. Greg thought that was extremely odd since he had waited in the lobby as instructed with a pager waiting to hear of my condition. When his pager buzzed, he went to the front desk. The doctor didn’t tell him anything significant about the biopsy. Perhaps the doctor didn't want to get into the details especially since I wasn't his patient. Who knows?

I have learned through the years that doctors say things which sometimes don't turn out to be the way they said it would be. Yeah, they are not super-human, darn it.

Again, it must not be good because how difficult is it to say everything is normal.

Let's face it, it is bad news 
Friday, Dr. A. called me.  

He said, "I am calling you because I didn’t want "this girl" waiting through the weekend not knowing anything. The cells are not normal cells." 

I said, "This reminds me of what Dr. W.(my surgeon) had said 3 1/2 years ago. Dr. W. had the slides sent somewhere out of NC."  

He said, "Yes, they were sent to Vanderbilt." He then said, "I am going to go ahead and send you to Chapel Hill where they can get rid of this for good."  (Seems like I remember his voice trailing off when he said this.  Looking back now I wonder what the H*** he was talking about--get rid of it, really?)  

I asked, "What can they do for me that can’t be done in Wilmington?"  

He said, "I want you to have access to 2014 drugs."  

At the close of the conversation he said, "By the end of the day today (it was already late), we should know the result of the biopsy."  

He never called me back.  

The results turned out to be exactly the same as before. Breast cells turned cancerous. This cancer was never gone from my body. Just sitting there growing on its way to kill me.

To this day, I still don't understand why I couldn't be treated in Wilmington. I have the impression, though, that Dr. A. didn't want to treat me any longer. I haven't been able to come up with another conclusion. 

A patient in Chapel Hill, no easy task
A man from Dr. A.'s office called me about 10 minutes after I had ended my conversation with Dr. A. to let me know that an appointment in Chapel Hill was to be scheduled.  (Good thing he didn't call a few minutes earlier because I had been throwing an angry tantrum in the kitchen.) He called to say that Chapel Hill would call me in approximately 48 hours. That would be Monday or Tuesday. He explained I should call Chapel Hill if I did not hear from them.  

As soon as Monday arrived, I was too anxious to wait till Tuesday so I phoned Chapel Hill's scheduling department. No one knew anything about me--figures. The person I spoke to said they had no records of me. I immediately called Dr. A.'s office. I spoke to the Records Department and to Dr. A.'s nurse. She said she would call me back. Dr. A.'s nurse finally called to say my records would be faxed overnight. 

The Tantrum
My tantrum was really the only angry tantrum I have had over these 5 months. I yelled about how incredibly sad I was. I felt so defeated. In 2005, at stage 0, I should have been cured. I screamed about how mad I was at Dr. W. for leaving at least one cell behind. (Not something she could see, yeah, I know.) I threw the lid off the trash can and threw whatever was sitting on the counter. Greg tried to hold me, but I pushed him away. I ended up huddled on the floor sobbing about how sad I was and how I didn’t want to leave Reese.  

"She won’t really remember me because she is only 10."

Finally an Appointment
So began the week of trying to get an appointment in Chapel Hill. Since, the person in Chapel Hill had no information about me, she wanted to fax me an authorization sheet so she could get my records. I told her I had called Dr. A’s office and my records were to be bundled together and Fed-Xed overnight.  I expected a phone call on Wednesday, but none came. 

I called Chapel Hill on Thursday and was told a package arrived Wednesday, but my slides and notes from chemo and radiation were still needed.  She again wanted to email a form for me to print, sign, scan, and email back to her.  

Trying to remain calm, I again said, "Let me call Dr. A.'s office and find out why these things aren’t in the package.  I was assured that all would be sent." 

I left a message with the Medical Records Department and with Dr. A.'s nurse.  Then I spoke to Greg who told me to go to the office.  I had already thought that, but he gave me that push I needed to go. 

Without having had a shower and looking pretty miserable, I drove to Dr. A's office and walked to the counter where the receptionist said, "How are you?"  (Why do people always ask, "How are you?" at doctors' offices.  Honestly, you might have recently found out you have cancer for the third time!)  

I told her, "Not very well.  I would like to speak to Dr. A.'s nurse."  

Of course I was told to have a seat, and she would be out shortly.  So, I sat down in the lobby and quietly began to wait. I looked at all the old people also quietly waiting. I so want to be old.

Soon the nurse called me through to the other side of the door.  

We walked, and she said, "Let’s go in this room."  

It was the puzzle room. The place I always waited until a room opened-up when I was to see Dr. A. (I have learned that other oncologists have puzzle rooms. I suppose it is nice if you like puzzles.) She then proceeded to give me a copy of the Fed-Ex shipment slip. I told her I didn’t need that. I needed slides sent. She said she would call the person in Chapel Hill and talk to her. 

Later I called Chapel Hill to see if it all had been resolved. The person handling my case said that Dr. A.'s nurse told her I had not had chemo at their facility. I exclaimed, "What is she talking about!  Let me call Dr. A.'s nurse." So I called her. (This is ridiculous, don't you think?) I told her I had chemo there and radiation at a local radiation oncology center with Dr. N.  

She said, "Well, we have a new system. You didn’t show up there so let me look elsewhere."  

When I got off the phone, I lost it. Honestly, I am not a nurse, and even I know that if you don’t see a patient in a new system, of course you look elsewhere especially when the person has been a patient longer than a year. 

I was boiling mad as well as very emotional at this point. I could not believe the lack of follow-through from these people. I had to keep calling people to make sure records were sent. Why couldn't these people do their jobs? Oh yeah, and the person in Chapel Hill said that if the rest of my information did not arrive, my appointment would have to be moved to April 22nd.  That flipped me out too.  I mean slides and notes are not there before today or tomorrow, I could not keep the April 15th appointment. Good grief, cancer is growing in my body. I need chemicals going through me now, and they want me to delay my appointment another week!  This is beyond ridiculous. Thanks Dr. A. for making this nice and easy.   When I spoke to Chapel Hill again, the woman changed her tune and said I could keep the Monday appointment.  

"We don't want you to have to wait any longer," she said. 


I was originally, according to Dr. A., supposed to see the head of oncology in Chapel Hill. She only sees patients on Tues and Thursdays, so now I am to see another oncologist.  What a headache. Just not quite the easy and quick appointment Dr. A. had made me think I would get. See what I mean about doctors saying certain things that aren't always the case.

So now, it is Sunday. I have spent much of the day very upset because I am scared. I am so worried that it is in my lungs because of all the phlegm I have in my throat. Sometimes it isn’t that bad, but often it is quite bothersome. I hope that the problem is allergies. I am also concerned about how the right side of my neck has twinges of pain every so often and my throat hurts all the way up to my ear. One moment it hurts near the base of my neck, the next moment in the middle or up near my ear. Occasionally my left side will feel a bit itchy inside my ear which gives me hope that it is just allergens. I do worry about my brain.  Sometimes I feel a bit unstable on my feet. But then I wonder if it is just my being so worried that my imagination is influencing how I feel. I am so scared.  

Continued in September Post labelled "Part 2".