I started writing this in May, close to one year after my diagnosis and the start of chemotherapy.  The true anniversary has passed, but it still feels like a good time to reflect on the most intense year of my life.  James and I haven't talked to many people about those early days, so I'll start from the beginning. 

Looking back, there were subtle signs that something was wrong several months before my diagnosis.  For example, even though I'd been taking the same exercise class for a few years, it became more difficult.  At first I thought it was because I had a new instructor who used different equipment, but now I believe the tumors on my bones had decreased my range of motion and made the movements more painful.

In April, I started having what I thought were problems with my gall bladder.  The doctor wasn't sure and thought it might be 'tummy troubles", but she also scheduled an ultra sound. I think what she initially felt was my enlarged liver but she didn't realize it.  Given my symptoms, I know that many doctors could have come to the same conclusion, but I've decided not to see her again.  When I finally did have an ultra sound, it showed that my liver was so large and full of tumors, it had virtually flattened my gall bladder.  Before the results, I remember thinking, "It will be so inconvenient if I have to have my gall bladder removed."  Now that sounds like a picnic! 

My doctor was out of town when the results of the ultra sound came in, so I saw a doctor I had never met before.  I know she couldn't have presented this as good news, but because she was young and obviously hadn't done this before, she made it even worse.  I left the office thinking all was lost and I was to blame.  As if things weren't bad enough! 

About that time, my physical symptoms increased dramatically.  My bone pain became unbearable and I couldn't sleep, turn myself over in bed, get dressed by myself or walk very far.  James later said he thought he was watching me die.  I recently found the lists I made during that time, one of things I wanted to get done and one of information I thought James would need to know when I was gone.  The lists are far from complete but I don't spend much time thinking about them. What a difference a year makes. 

The first oncologist I saw seemed to know what she was doing but I felt like a "case" and not a person.  She also said, (are you ready?), "I see people live with bone metastasis for 10 years. Of course, you came a little late."  James and I looked at each other, thinking, "Did she really just say that?"   The truth is, she may be right, but neither of us could believe she had said it out loud.  And Dr. Kaplan said he's seen women do well on Tamoxifen for 20 years, even with as many tumors as I have.  We do have to be realistic, though, because the average amount of time it works is two years.  The good news is there will many options for me after Tamoxifen.  That sounds a lot better than, "You came a little late!"

I knew I should get a second opinion, but my friends also encouraged me, and for that I will always be grateful.  Changing doctors was by far the most important decision I've made.   I'm getting a little emotional as I'm writing, because I know that whatever the future brings, my life is going to be better than it would have if I stayed with the first oncologist.

We were told by one nurse that a second opinion wasn't needed because there's only one accepted treatment plan for Stage 4 cancer.  She even showed me the large book of treatment options that many physicians use. We now know that she was wrong.  Her statements led us to be very surprised when Dr. Kaplan proposed a much more aggressive treatment plan. We already knew he had a reputation for being a fabulous doctor, but we quickly realized we had met someone who truly cared about us.  The day we met him was the day hope was born.

As you can see from this brief essay, we received a lot of bad information and weren't always treated with respect.  Looking back, I can't believe how horrible that was and how much stress it added to an already unbearable time.   That's why when I hear someone has been diagnosed with cancer, I want to help them.  Even if they have a different kind of cancer, even if they're a daughter and not a patient, even if they have a good support system.  I found that there was nothing more reassuring than talking to someone who had been there.  I hope that none of you are faced with this yourselves or with someone you care about, but if you are, please feel free to contact me. 

Within a month of starting chemo, my pain subsided.  It's been a long road and I'm still dealing with some side effects from chemotherapy and adjusting to the tamoxifen (more on that next time), but thinking about the past is a good reminder of how far I"ve come.   I know we should do a little more planning for the future, but after the year we've had, I just want to live for a little while. 

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