My Breast Cancer journey.. part 1

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.. I’m now officially clear of breast cancer for three years – YEA!

I’m writing because I know the experiences of my sisters in this awful sorority helped me navigate a very scary time in my life.

I vividly recall my ex finding the lump… and the whirlwind that ended in first a lumpectomy and then a mastectomy.  I’d always said that if I had breast cancer, I wouldn’t think twice about taking off the offending boob… and I didn’t.  To this day, I wouldn’t change my decision.  The time between hearing the words, “I’d like to take a closer look at that lump” — and my first visit with my oncologist (Dr. W) were scary, to say the least.  I was 39, had been married for almost 18 years and had a job I loved.  I’d taken the summer off of teaching to write my dissertation.  My ex found the lump the week before  my summer off was supposed to start.  Needless to say, my summer plans of writing my dissertation, swimming and relaxing changed in an instant.

It’s a myth that they won’t tell you that you have cancer over the phone.  My GP got my biopsy results quickly and called me the day after the procedure.  He was blunt, he said “the results show cancer.”  He called quickly because it was an aggressive form of cancer and the surgeon he trusts could see me at noon that day.

We got in the car and went over to meet my surgeon… an older woman who was all business.  We talked about the options and she told me that, “women’s lib changed the laws so that you can have reconstruction at any time”… I had to laugh at the term “women’s lib”, because I’m a third-wave feminist and we don’t use that term… she didn’t understand why I was laughing until I explained it — only then did she find out that I was a Ph.D. candidate in philosophy and had written papers on feminism, particularly feminism and science.  At that point, she showed a bit more respect for me.  It didn’t change her bedside manner at all, but I could see that she realized she wasn’t dealing with any old dumb 39 year old…

The surgery took two parts, as I had a lumpectomy and they removed lymph nodes the first time — but didn’t get clean margins.  So, before my lumpectomy scars healed, I was back to have the whole thing loped off.. I ended up with a DD on the right and an indentation on the left… two scars, one under my arm and one where my breast was.  I also had two drainage bulbs hanging off of me… and I was scared shitless of the chemo and possible radiation that was to come.  I was also nervous because my ex’s job was teaching college 400 miles away… so his daily support for me would end in mid-August.  My last surgery was mid-June.  I had two months to get my shit under control so he could go back to Omaha.  My mom is a nurse — and an amazing person, but I felt it was unfair of her to ask for so much support — and, I really wanted my husband to be the one there for me.. so I felt I needed to be in control of things and independent by the time he went back to work.

I was referred to a group of cancer clinics in my city  (Cancer World — not their real name, but it works)–they had a location close to my home, so I called and asked for the next available new patient appointment.  It was then that I entered Cancer World for the first time.  In the hospital and with my GP and my surgeon, I was a patient with a problem they could tackle.  I had a lump, it needed to be diagnosed and it needed to come out.  They knew they’d pass me into Cancer World if there was a reason to do so — and the results of the lymph node tests and scans would tell them if there was a reason.  To the doctors so far, I was a short-term project.  I was fine with that… sure, they’d do follow up and give me good care, but their gig wasn’t long-term patient relationships and we all knew it.

Things are different in Cancer World, as I was about to find out.  My first appointment took most of the afternoon.  (this is the part that angers Andy..) before I saw any medical people, I saw the money lady —  she assessed my insurance, saw that I had plenty of coverage and told me to go back to the waiting room — it was then that I asked her what would happen if I didn’t have coverage, she pretty bluntly told me that our conversation would include discussions of savings, assets, second mortgages etc..

The next step in Cancer World was with  a nurse who took my vitals and explained the side-effects of chemo.  She was fantastic and took as much time as I needed to understand.  Little did I know at the time that this sweet, unassuming person would become vital to my care.  Nurse Q is amazing…. but I only found that out later.  She was sweet, calm and patient.  She asked questions about my life, my work and my overall health… then she proceeded to scare the shit out of me with the prospect of chemo.  She explained that I’d need a port, as the missing lymph nodes made it unwise to do anything on my left arm and the chemo drugs would ruin veins in my only good arm if I used it all the time.

What I didn’t know at the time was that the port would be completely under my skin.  It’s installed in the hospital, about two inches from my collar bone on the right.  After the scar healed, the only evidence of it was that you could feel a hard triangular shaped lump there — and sometimes see the lump in the mirror…. the installation happened later and what I thought at the time was more like an open line sticking out of my chest — I was glad to be wrong about that.

After Nurse Q, I met Dr. W.  He’s a sweet older man who treats patients like individuals, not numbers.  He’s an old-fashioned doc in that he takes time to get to know his patients, check in with them and know their stories and personalities.  He told me the basics of my cancer — (I didn’t know at that point) — stage 2b, with 1 involved lymph node — the one that had been removed.  The cancer had spread to the first lymph node but not beyond — which is kind of like saying it stopped at the last gate before it entered the rest of my body…. probably.  I had no “hot spots” elsewhere, not in my lungs or other lymph nodes, so radiation wasn’t needed as there was no place to radiate.

After the diagnosis part, he started to ask me about my life and tell me a little bit about his.  He’s married to another physician.  He’s been an oncologist for a long, long time — really, before oncology was a specialty.  He and his wife have two grown children and love to show dogs.  Before he told me the scary stuff about chemo side-effects, he found out a lot about me.  He told me that I’d need to attend a chemo class taught by the chemo nurses before I could start… then we scheduled my first chemo for July 17, 2008.

Dr. W’s last recommendation for me was that I should strongly consider entering a drug trial going on at Cancer World.  I thought it was worth hearing more about and I liked the idea that I could help make a new therapy available… so, I met the study nurse.  SN is all business, all the time.  She came in and talked about the study, my rights to end participation at any time, the set-up of the study and the plan for follow up.

After that, I went home — pretty mind-blown — and scared.   I had an image of myself puking, bald, with diarrhea and mouth sores… exhausted and unable to work.  Scared doesn’t even cover it — I was pretty freaked out.

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