And it begins...

Today is Saturday, the day before my vacation, the ides of August, and day 21 of my new and improved normal.  I do not blog - clearly, since I still use two spaces after a period when I type, and this I understand to be a cardinal sin of writing in the digital age.  Nonetheless I have things to share and news to convey and too many people to whom to convey it.  So, here we go.

Day 21 is actually too late in the story.  For those just tuning in, I'll give you the whole rundown.

A little more than five months ago I thought I had a stomach bug.  Symptoms progressed such that I ended up in urgent care on a Saturday morning in early March.  However by the time I saw a doctor, everything was almost back to normal - no more awful cramps, no running to the bathroom every hour, no fever.  Various poking and prodding revealed no tenderness or other cause for concern.  Tests of bodily fluids were normal.  All was well and good.

The only thing that did not return to normal was my daily constitutional, if you will.  Now, sometimes this happens to people.  I was not overly concerned; this was mostly just annoying.  I waited two months before I went to my primary care doctor.  Coincidentally, on the day of my appointment, my right knee had become quite swollen (for no good reason - painless, temporary swelling has happened to this knee for years).  My doctor was very concerned about my knee and not so much about my gastrointestinal distress.

That landed me with a rheumatologist a couple of weeks later.  Coincidentally, on the day of that appointment, my knee was not swollen at all.  A half dozen canceled appointments and three weeks later I finally managed to see him when there was enough fluid present for him to take a sample.  (That's a lot of fun, by the way, a big old needle in the knee.)  All this told us was the problem was inflammation and not infection.  With that out of the way he encouraged me to (finally) see a gastroenterologist, as the original problem continued to persist.  It was never unmanageable, and aside from a stray contraction-like cramp now and again, not painful.  Nothing about my day-to-day changed because of it.  It was just weird.

A month later I'm at that appointment, and again nothing is overly concerning, and again poking and prodding and all kinds of tests don't tell us anything special.  Next up: colonoscopy.  I scheduled this for Thursday, July 30th.  I was good and followed the rules.  The preceding Saturday, I went shopping for low fiber foods, lots of liquids, and the laxative prep, and tacked the list of what I could and couldn't have for the next five days to the fridge.  All set.

Sunday morning around 4am my belly woke me up.  All of a sudden this was not manageable and very painful, waves and waves of cramps all across my abdomen.  I woke up my husband, Ryan, and told  him something was wrong.  He was barely awake and asked if I needed to go to the emergency room but I wasn't sure.  I called urgent care instead.  My pain wasn't localized and I had no fever, just the agonizing cramps that made it impossible to get comfortable.  The woman I spoke with didn't seem impressed, though said I was entitled to see someone, but as the office didn't open for appointments until the afternoon I felt she just wanted me off the phone.  Eventually I took some Tylenol, and then I got a fever, and I called back.  This time I was told to go to the emergency room - someone would want to evaluate me with tools they didn't have at the regular office.

We went to Mount Auburn Hospital.  All day the cramps had been a little off and on, coming in waves that were very painful, but then would subside for a time.  When we got there they had subsided a little and I started to second guess the decision.  The fever was gone now.  When I got into the ER they gave me an IV, scheduled a CT scan of my abdomen, a chest x-ray, a pelvic exam... and all I could think was, this is overkill.  I drank the purple liquid contrast for the scan and had the other procedures, and within two hours was in for the scan.

Not too long afterwards the ER doctor came in and closed the curtain (all the way this time).  She wanted to talk to me about the results of the scan.  It revealed a mass that looked to be circling my large intestine; it was blocking anything from getting out.  Whatever had been getting out the last four and a half months was only what could leak around the mass.  I hadn't had fevers all those months so infection was not likely.  What was likely was cancer.  She said she was sorry and held my hand, told me they would admit me, and there would be others to talk to me soon about next steps.

Ryan had taken our 3-year-old Connor to get dinner before I went for the scan and I had to text him that the results weren't good and I was being admitted.  An admitting physician came and talked with me before they moved me; she was also sorry.  The ER nurse who got all my things and IV ready to move was sorry but said, "Don't put the cart before the horse."  I cried a little but I wasn't really absorbing the situation in any meaningful way.

The next 18 hours were a painful morphine haze of more tests and surreal conversations.  Now I really had to have that colonoscopy and had to attempt to down 4 liters of prep that same night.  I tried but nothing was moving... I was bloated and distended and miserable.  The first attempt at the procedure the following morning was not successful; a sigmoidoscopy later in the afternoon was and samples were taken for pathology. Scans had also shown spots on my liver and an enlarged ovary, and more diagnostics were scheduled, but I was still in a lot of pain.  Surgery was scheduled for the next morning to (at a minimum) relieve the pain and work around the blockage - a temporary diverting transverse loop colostomy.

I'd say that was one of the longest nights of my life, waiting for that surgery.  I had more morphine every hour but nothing helped when the cramp waves came.  They took me to pre-op mid-morning and I was in post-op by early afternoon.  The procedure was successful and I woke up, having just had emergency abdominal surgery, comfortable.

I also had a new egress that I'd need to learn to deal with, eventually.  I was scheduled for another CT scan, an MRI, blood work... but we just needed the pathology, which normally takes five days.  They got the samples on Monday - if we were lucky we would have results by Friday.  Now it was Tuesday.  So, we waited.  I made friends with the nurses.  I had wonderful friends and colleagues visit.  I had so many flowers they filled the window ledge.  Ryan and I watched a lot of Law & Order (it's always on).  On Friday, I was told I could go home.

A couple hours before we left, the oncologist came to visit.  She had just been in a conference with the surgical team and others, reviewing the preliminary pathology report.  She confirmed for us that the mass was in fact cancer.  She said there would be conversations about treatment and such but first I should go home and recover from the surgery.  I still was not absorbing this information.

We came home.  I recovered.  I saw more friends.  I worked from home.  I even went out to eat!

We saw that oncologist again, and then got a second opinion from Dana-Farber and switched my care there, on the spot - if you've been lucky enough to never have had a reason to go there, please know that if you ever have a reason, you won't want to be anywhere else.  I have a gastrointestinal oncologist, a colon and rectal surgeon, and a gynecologic oncologist (they could not safely rule out the spread of the cancer as the cause of my ovary's abnormal size and shape; the needle biopsy required was too risky should it result in a rupture and spread cancer cells all over my abdomen).  All of them have said this is treatable and curable and they will get me through it.  I have my last surgical follow up at Mount Auburn next Thursday; I get a portacath next Friday; I start chemotherapy on Monday, August 24th.

I have still not fully absorbed the situation.  I cry now and then, suddenly and unexpectedly and usually when I'm alone, and I'm not sure what about.  I'm too young, too healthy.  It's unfair and scary and wicked inconvenient.  It's an unreasonable burden for my husband and kids.  I had no say in the matter and I still have to deal with it.  Of course that's what I will do - deal with it.  I'm adaptable and strong enough and confident in the tidal wave of support that is behind me.  And so we'll get on with the business of getting better.

Today, though, is the day before I go on vacation.  I need to pack.