Saturday, June 30, 2012

My Story of Mom's Cancer.

This post has taken me a long time to write.  I picked out the photos first.  Wrote up the story, and then let it sit for a while.

June, 2007.  I returned from several weeks overseas to find 5, 6, maybe 7 voice mail messages from my family.  While I had been in Europe, Mom came down with a severe case of jaundice and digestive problems that landed her in the Emergency Room.  An exam found two tumors on her liver, and she had surgery to remove them for biopsy.

I only had about 3-5 weeks to decide if I was going to visit before my Obsterician grounded me... but Mom hadn't cleared me for her HIPAA yet, so I couldn't get very good information to make the decision.  We had so much going on that I ended up not travelling.  During that time, the tests came back with a diagnosis of Biliary Cancer, cancer of the bile ducts, also known as cholangiocarcinoma.

I spent some time researching what I could find on that cancer.  It is very rare, although due to a parasite in fish it is slightly more common among the Korean population.  (My family is no more Asian than any other family of mostly European heritage.)  At the time I researched it, the 3-year prognosis was less than 10 percent, and nobody thus far had survived 5 years.

Now, I know a little bit about statistics, and outliers, and the risks of averages.  Just today, I saw a joke about somebody who drowned in a river that was, on average, 3 foot deep.  Historical data has some usefulness for aggregate data, but can say very little about specific cases.  There was always the possibility that Mom could be the first person to live more than 5 years with this cancer.  In theory.

So, I finished my third trimester in Houston, had the baby, and a lot of other stressful events happened that have nothing to do with Mom's cancer.

When DS was about 3 weeks old, my mother was hospitalized with pneumonia.  She stayed in the hospital for a week.  It was a wake-up call for the entire family, that even while her cancer treatment was going well, her immune system was weaker, and a sudden illness could cut her battle short.  So, in October of 2007 Brian, myself, and our newborn son found ourselves on a flight to Chicago, so that my mother could see her grandchild.  I was still away from work on maternity leave, so I don't think any of my coworkers were aware of the travel.

This photo is from that visit.  By the time we got tickets and arrived, Mom had been discharged from the hospital, and was receiving supplemental oxygen at home.  I tend to call this my "Return of the Jedi" photo.



We went back to Indiana for Thanksgiving 2007, so DS could meet the extended family.  This may well have been the first and only occasion that my family was able to get a photograph of four generations together.

I think it must have been over Thanksgiving, that I learned that Grandma also had cancer, a similar cancer to what my mother was fighting.  She had been widowed for two years at that point.

And this is from Christmas, 2007.



During chemotherapy, my mother rediscovered her crochet skills, and made blankets for the entire family.  She asked me if I wanted one, so I brought up a bag full of scrap yarn, sorted into "colors I like," "colors that would be all right," and "colors I don't like, but you can have for other projects."
I'm not sure my mom really understood my color sorting.  Also, she seemed to think that just because I attended Purdue, I would LOVE gold & black.  (Black is all right.  Yellow, not so much.)  So she bought a skein of bright yellow, and a skein of black, and tried out a new style of crocheting.



We moved to Alabama early in 2008, for a multitude of reasons.  One of which was so that we could continue to make trips up to Indiana fairly regularly.  But it doesn't look like I have a whole lot of photographs from those visits.  This is from January, 2009, so about a year after the previous photo.

  If I recall correctly, she had had a hysterectomy that fall, around August or September.  Mom had lost quite a bit of weight at this point.  I think my brother with Asperger's called her "The incredible shrinking mother."


This is in September of 2009, at Grandma's funeral.

Yes, Mom's holding her grandson.  No, I won't let you see his face.  The hat, that appears in the Thanksgiving 2007 photo?  Steven gave it to my son at this event, he's wearing it here.  This was the second time my mother was in "remission," if there truly can be such a thing as remission from biliary cancer.

In October, the cancer was back again.  Early in November, they scheduled a short surgery to run a scope.  What was supposed to be short, turned into a 4-hour ordeal.  The scope perforated her colon, so they opened her up, scraped out all the cancer they could, and left her with a stoma.  Somebody told Mom that the stoma might be reversed in a year or two.

At Thanksgiving, it was obvious that Mom was still in a lot of pain.  She brought me with her to a doctor's appointment... but stayed in the room while I asked the doctor questions.  I didn't recognize the name of the painkiller Mom was on, but later in the conversation the doctor let slip that it was a form of Morphine.

She started a stronger chemotherapy in December.  Twice that month, Mom was hospitalized with fever, that was thought to be infection.  The first time, they told me to sit tight.  The second time, I went anyway.  That was the plane, bus, and automobile trip.  They did another surgery, thinking she might have a blockage in her stent.  But no, the stent was clear.

On one of those two visits, Mom gave a long and rambling dialogue about how she could keep fighting this cancer for years.  I had the distinct impression that she had asked the doctors NOT to reveal her prognosis, and had not done the research on Biliary Cancer.  From her perspective, it was in God's hands.

At New Year's, Mom asked the doctor for more chemo, and the doctor refused, saying that another round would kill her.  I guess they went back, and persuaded the doctor to try one of the weaker chemo's again.

In mid-January, at chemo nadir, Mom ended up in the hospital again, received a few more pints of blood.  They thought she might have a blood infection.  A few days later, they said it was time for hospice.  The chemo had failed, and there was nothing more they could do.

I applied for leave under the Family Medical Leave Act, used the dregs of my vacation and sick leave to get what pay I could from the time off, and we headed north to visit for the duration.

I think we got there on a Friday or Saturday.  The hospice story can wait for another time.

A week later, on Sunday morning, my sister called and Mom had passed away overnight.  (When I left Saturday night, I had known it was close.)  To the end, I'm not entirely sure she understood that she was dying.  I got the strong impression that she believed, even on her last night, that God could turn this all around and heal her.

While I do believe that miracles can happen (usually, I think, in the form of false positive / false negative test results)... I guess I also believe that there is such a thing as too late.  Mom lived about 2.5 years after her diagnosis, with extensive chemotherapy, surgeries, and aggressive treatment.  Grandma lived about the same amount of time with almost no treatment.