1986-The Diagnosis…

I was reading my twitter feed a while back and came across a retweet by someone who was looking for “success” stories for a friend who had just been diagnosed with Stage 3a breast cancer.  I tweeted this person back and…in 280 characters, or 2 tweets…told her to tell her friend about me.  I had a similar diagnosis in 1986.

It made me think back to when I was diagnosed with breast cancer and how my own friends kept looking for success stories for me to be inspired.  I don’t think we found any.  At the time, Jill Ireland had breast cancer and I read about it in People, and Gilda Radner released a statement the same day I got my diagnosis that, she too, was battling cancer.  Ovarian cancer.

Someone bought me “First You Cry”, by Betty Rollins, which I read.  Someone else found “We the Victors” which was pretty inspiring.  Still, none of the books suggested or read, and none of the “well-knowns” who had decided to announce their own battles were quite what I was looking for.  I wanted to read a success story about someone who had Stage 3-4 breast cancer that had metastasized.  I could find none.  Did they all die?  Was it really hopeless?  The answer, so far, is…well, no.  At least it hasn’t taken me, yet, and I’ve made the most of the last 24 years…just in case.

So…I will write my story.  I have never done this…for many reasons.  I will write it, and I suspect this is going to pour out of me…bleed from my soul.  I don’t plan to have my editor read this before I post it.  (My apologies, Reen…) She can read it later with all the other pages I’m behind in getting done, lately… and I am only going to re-read it once, myself,  to make sure I haven’t left out meaningful articles or have sentences that have no meaning.  This is the raw…me.  Run on sentences, dangling participles, and all…

I was in my early 30’s and shouldn’t have cancer.  None of the doctors thought it was cancer, yet, none of them could tell me it truly was not.  Instead, they made me go for mammograms (tissue too dense to tell), ultrasounds ( “see here…how the waves are bouncing off the mass…”?), needle biopsies (“I’ve already had a needle biopsy by the doctor that referred me to you…don’t you guys communicate at all!?”) No one could explain why my underarm also had a lump that was sore. 

I was awake on the operating table when my doctor first cut me open.  It was to remove some of the unexplained mass of tissue for a frozen section biopsy.  Because of my high tolerance for drugs and high level of anxiety, I did not flow calmly into slumber like they said I might.  I was fully awake when I told the doctor I could still feel an uncomfortable pull of the scalpel.  They were finally cutting open the underside of my right breast to see this lump that had mysteriously appeared after I had bumped it while trying to carry and drag a new 20” TV into my apartment by myself.  I had thought it was just a bruise and would go away.  When it wasn’t gone 3 days later, and had, in fact, gotten worse and appeared to be growing and was even more sore, I went to the first doctor.

Now the surgeon was standing behind my head and cutting me open.  I heard him say, “This doesn’t look good…”  I opened my eyes and waited.  Finally, I said to him, “Excuse me?  Did you say this does, or does NOT look good?”

Long pause…..

“This does NOT look good.”

Tears started to roll down the sides of my face.  I heard him tell one of his nurses to go find my father in the waiting room.  (My father had taken off work and driven close to 150 miles to be with me at the hospital that day.)  The tissue was placed in a little sample cup and given to someone to deliver to a pathologist.  They wheeled me somewhere and I laid there as they showed my father into the room.

They must have told him because his face was red and wet.  Without saying anything he gently took my hand and at my first “out loud” cry he let go my hand and put his arms around me and hugged me, saying over and over, “I’m so sorry, honey…I’m so sorry.”  My father has always been a man of few words and since I had not lived with him during many of my formative years, at times, we don’t know what to say to one another.  This would be one of those times.  This would also be one of those times when he would try to be there for me, if I let him.  If it were that easy, I would have…

Many surgeons are pompous…they have no bedside manner.  Mine was one of them.  I hated him.  Many years later, I still hate his bedside manner, but have been told by other doctors that he performed a miracle surgery the following Monday.  After the surgery, he had to fly to Florida to be in a golf tournament, so he sent his scrub nurse to talk to me about what he found.  I was barely awake, yet.

The tumor was 6 centimeters and had probably been hiding in a duct.  He didn’t know if it was attached to, or laying on, the chest wall.  Since he wasn’t sure if it had actually been attached, he had scraped the breast bone.  They also removed a score of lymph nodes under my arm.  I later found out that the procedure was to keep removing them until they started finding nodes which were not cancerous.  Right now they were calling it Stage 3 cancer.  It had spread, however, and because of the size, etc.  it could be Stage 4.  I would need to see him in a week or so to remove the staples/stitches.  After telling me how successful the surgery had been, she left.

Alone in my room, I was in great pain.  I couldn’t move my arm.  They had placed a weird type of “breast cast” over my chest that seemed to be held in place with tape to which I was allergic.  Not only was it making me itch, it was also starting to cause my skin to bubble.  I had a tube in my side with 3 small bottles attached to it.  These were collecting liquid that was draining from my body from the surgery. They were hanging off the side of the bed and pulling which was also causing an uncomfortable pain.

My father went home for work after the biopsy the previous week.  I had sent him there.  He would be coming back with his wife during visiting hours this day of surgery having driven the 150 miles with her the night before.  They were staying at my apartment.  I felt all alone and it was my own fault.  I couldn’t remember when I had developed this attitude that I didn’t need anyone.  Was it after Grandma had died?

While I was feeling so humbled, and trying to come to terms with this life-defying disease, my door opened and it was my friend, Nancy.  I will write more about Nancy some day, but let it suffice for this story, her care, sense of humor, and encouragement helped me get through this, and many other experiences. 

I had adopted Nancy, her problems, and her family when I had found myself in her state and managing the office next to the one where she worked.  She was good company, up for almost anything, and had the best sense of humor.  Her sense of humor was one of the reasons we became friends.  She liked my dry wit, and we could sit over a drink and talk and before long we’d be laughing so hard our eyes would be tearing.  She like to write, as did I, and we had talked about writing a book together of our experiences in the dating world.  Instead, I eventually moved to another country, and she became an R.N.  The rest of this story may shed some light on why she needed to become an R.N.

She looked at me and immediately knew that I was not “alright, and resting comfortably”, as she had been told.  She had been so worried that she had left her own office without telling her boss and had come straight to the hospital.

She ran to my bed from her first glance at the doorway, and said, “What do you need?  What can I do to make you feel better?” 

I told her about the tape on the cast.  She opened up my gown, looked, and as she was looking, a nurse walked in.  I had never seen Nancy take charge before, but she motioned for the nurse to look, pointing at the “lesions” that were growing out from under the tape.  “THIS…needs to come off.  I’m taking it off unless you can tell me why I can’t.  Otherwise, maybe you can help?”  The nurse looked, and then became an ally.  From either side they both took a part of it and ripped the cast upward, gently pulling, but still taking skin that had bubbled with it.  I should have felt pain, but I felt more relief than pain. 

After that, the nurse gave me another shot, and through my twilight pain I asked her to remove the IV that was sticking in, or out, of me.  (In/out…whichever is the most painful and negative…?)  For that I had to eat, yet they had given me no food.  Once again, Nancy took charge.  The next thing I knew she had a tray of food and when I couldn’t raise my right arm to hold anything, she lifted my back with one arm and fed me with her other. She made me drink a whole 4 ounces of grape juice.  I couldn’t eat much, but she went out in the hallway and I could hear her talking loudly and then, yet, another nurse came in and removed the IV.

My phone rang.  It was another of my pretend “mothers” calling from North Carolina.  I was holding the phone with my left hand, and slurring my words trying to explain why I hadn’t called her to let her know what was going on…and I must have dozed off…the meds, you know.  I woke just slightly when Nancy took the phone and I heard her talking…”No, there’s nothing you can do…she’ll call you when she’s not in so much pain…maybe when she gets home…no, I think I’ll let her tell you…”zzzzzzzz Nancy knew some of my history and knew what to say to some of these people…hell, she probably felt like she knew some of them, even if she hadn’t met them.

The next time I woke up my father and his wife were there.  We talked for a bit.  Nancy left to get me something to drink and Barb, my foster mom, and now stepmother, hesitated and then she said, “Diana, I just wanted to tell you if I ever mistreated you or even treated you differently than my own kids…or made you feel like an outsider, or made you feel like you were “different”….well, I’m sorry.  I never meant to do anything like that.”  

Shit!  She read my journal…they were staying at my apartment.  I knew I should’ve put them up in a motel, or something…shit!  I was not going to deal with this right now.  Okay, I looked at her long enough to let her know that I knew…then simply said, “Okay.”  I looked at my dad, who was clueless, maybe, and squeezed his hand back.

A new nurse came in to see if I needed anything.  Before I could speak, Nancy asked her to look at the sores left from the tape that had been removed as I was still itching and some of them were raw and bleeding.  Maybe she could find some salve to put on them?  My father stepped out while she opened my gown to look.  I noticed Barb’s widened and curious eyes and looked down to see my bruised, black, halved right breast.  The bruising had also spread over to my “good” left breast.  Barb looked at the mess curiously and said, “Isn’t that something…both sides are bruised…just like a punch in the nose causes both eyes to blacken!!  Both sides are black!  Humph…ain’t that something?”

After my dad came back in, Barb said, “You know, Di, your dad and I were talking and we want you to come home with us when you get out of here.  That way we could take care of you every day and wouldn’t have to come so far.  Wouldn’t that be nice?”  She was talking to me in a voice as if I were still a 10 year old.  I told her I’d think about it, but I didn’t really think I would.  The rest of the conversation consisted of her trying to convince me to just give up and agree to go “home” with them. 

The nurse came back in…time for another shot of Demerol.  This was in the mid 80’s before they had pumps for these.  Otherwise, I would have used the hell out of a pump just to get through the visits and phone calls.  Barb, my father, and Nancy had stepped out in the hallway again, and I could hear Nancy’s quiet, calming voice talking but couldn’t make out what she was saying.

A few minutes later, Barb and Dad came back in, but it was just to say good bye.  They were going back to Ohio so they could both get back to work, but would call me and come up the next weekend, if I needed them…Huh?  If I needed them?

After they left, Nancy stayed with me past visiting hours.  We watched TV, other people visited and left, I dozed in and out.  Before she left, I asked her what she had been saying to Barb and Dad outside the room, earlier.  She took a deep breath, looked me in the eye and told me, in what I now refer to as her cowgirl voice,  “Welp, I told them I knew you better than they did, and I knew you didn’t want to go home with them, and you’re home is here.  I told them you were facing the fight of your life and you needed to stay focused on yourself and I would help you with that. “She then said, “Your dad is really concerned and when he asked me what they could do, I told him to just be here for you when you called.  Then, I told him, and I hope you don’t mind that I did this, but I told him his daughter is a warrior and fights best when she’s left alone…then I told him I thought it was really good he had taught you to be this way.  Then I winked at your dad…”  She smiled broadly, and then as she picked up her purse and stretched, she said, “I have a feeling your dad’s wife pretty much doesn’t like me at all.”

“That’s okay,” I told her.  “I like you a lot, right now.  Thank you for everything you did for me today…for being here.  Will you be able to make it tomorrow?”

To be continued………………..

Next:  The Real Battle Begins or How to Take Charge of the Needles and the Assholes

~ by chidiana on June 20, 2010.