2015 Did Not End Like I Thought it Would: Hello Cancer! (Part 4 of 6)

January 5, 2016

When I got home from work that day, it was essentially a normal night for us.  The kids were home, and I think Doug was a little shocked that we never really addressed the elephant in the room.  Not that night, or even the next couple of days.  The kids were home with us until they went to their dad's on Saturday night, and I didn't want to hide behind closed doors and whisper what-ifs.  I didn't want to do anything that might make them worry or suspect something was going on.  Doug took his cue from me and just let it lie for the time being.

In the meantime, I dove into research mode.  Without really knowing my diagnosis, I looked up all kinds of possibilities.  I looked up Paget's disease, of course, since that had already been thrown out there as a possibility by my primary doctor. (Paget's is a specific type of breast cancer named after the doctor who discovered it.  Only 1%-5% of breast cancers is Paget's disease of the breast.  I also learned that there are other diseases named after Paget, so to just say Paget's disease is kind of non-specific.)  I looked up stages of breast cancer, since that's really the only reference point I had ever heard about in terms of progression of the disease.  The doctor who read my slides didn't give me any indication about what she thought the stage was, so I tried to guess.  According to what I read, if it hadn't traveled outside the duct, it would be considered a Stage One.  But I also read that if the affected area was larger than a certain number of centimeters, it would be considered Stage Two or Three.  Mine was 5 or 6 inches.  Stage Four meant the cancer had spread to other parts of the body, with significant lymph node involvement.  So my best guess was that it was Stage One, Two, or Three.  I also looked at survival statistics for all of those stages.  Stage One was very promising.  Stage Two wasn't even too bad.  I started liking the statistics a lot less after that.

I read up on what a mastectomy would entail.  Online research varied widely on recovery time and methods.  I had no idea.  Would I need a week off of work? Two weeks? Two months?  It would all depend on a variety of factors, most of which I had no definitive answer to yet.  Would I need chemo? Radiation?  Single or double mastectomy? Immediate or delayed reconstruction? So much depended on information the doctors would garner from the biopsy, but I tried to be as prepared as possible in advance for the information I might hear. I was wandering around in a proverbial maze of information without any guide or direction, but it did allow me to become a sort of objective observer of the process instead of focusing on my personal investment in the outcome because I had no idea what that would be.  I was an avid and voracious researcher, trying to find out hypothetical information.  Despite that, I had to continue to push back the nagging thought that crept up quite a lot in that first week--the knowledge that sixteen years ago, with no prior warning, my mom had been diagnosed with a late-stage aggressive kidney cancer.  Just nine months after her diagnosis, she was gone.  I tried very hard not to let that thought take up too much real estate in my brain that week, but it was there.

One of the pieces of research I did was looking into the fine print on my medical benefits package, which I had never really had to delve into too much.  On that Saturday night, as we were getting ready to go out for a date night after the kids had gone to their dad's for the weekend, I brought it up to Doug.  "I know we haven't really talked about this yet, but you know I've been reading up, and my insurance covers not only a mastectomy, but reconstruction as well, and even reductive surgery on the other side in order to make them match."  It was the first thing I'd really said since I gave him the initial news.  Once again he reassured me that how it all looked was not at all his primary concern, but I think we were both relieved for my sake that we had started the conversation finally, and that there was good news for helping me to feel like I would look 'normal' after all was said and done.  After I told him my rationale for not having much of a conversation when the kids were home, I think it made more sense to him that I hadn't really acknowledged that just two days earlier I had dropped a pretty big bombshell on him out of the blue.

So then, the wait.  Although Doug had offered to go with me to the biopsy on Tuesday, my good friend Mo offered.  Since the biopsy was pretty much a solo deal--no meeting with a doctor, no decisions to be made, just moral support from the waiting room--we opted for Mo to go to this one.  Not being thrilled about doctors or needles made this an especially nerve-wracking appointment, but I knew Mo had also been through that particular experience and it was a great sense of support for me just knowing that she knew what I was going to be doing.  Although Doug would absolutely have been willing to go--and made it clear that he was completely on board to be at all the other appointments that were surely in my future--I am so thankful Mo was there.  It took longer than I expected, and though it was an uncomfortable experience, because of the design of the table I never saw the needles or the actual process that was occurring.  That's probably a good thing.  The doctor who did the biopsy said he would call the next day with the results.  I specifically remember him saying that when he called I was absolutely not to answer if I was driving.  The poor man has probably had to give some pretty bad news to an awful lot of people, and I think he was cognizant that someone operating a vehicle while receiving that kind of news could result in erratic behavior behind the wheel. He assured me that if I was driving when I saw him call, he would still be there when I stopped or pulled over to call back.

As promised, he called back the next afternoon.  I was in a meeting but was anticipating the call, so when it came, I stepped out of the room.  The doctor's first question? "Are you driving?" And then he told me, on Wednesday afternoon, October 14th, that I had tested positive for cancer.  He was kind and compassionate, but reiterated what he had suspected when he told me the previous day that he was fairly certain what we were dealing with was DCIS--ductal carcinoma in-situ.  That meant nothing to me.  All I really heard was I had cancer.  It was verified.  He then told me that a surgeon had already been assigned to me, as well as a plastic surgeon, an oncologist, and radiation oncologist, a geneticist, and a nurse advocate.  The nurse advocate would call me the next day to set up my appointment to go over all my options for treatment, which she did.  My appointment was on Friday afternoon of that week.  As luck would have it, my oldest daughter was coming home from San Diego that Friday night to visit her grandmother, who was in town.  A Friday afternoon meeting with my team would mean that I would have a game plan in place.  Friday night, when we picked up Bree from the airport, we would take all the kids somewhere and let them know what was going on.  Not the kind of homecoming I wanted for her, but it's definitely not the kind of news I'd want to give her over the phone.  All three of the kids would learn about my upcoming journey in person, all at once.