Thursday, August 26, 2010

Birthday week

Some people spend a week or longer celebrating their birthdays.  A friend from work spent the entire month of January celebrating his birthday this year, complete with a party full of out-of-state guests.  Well, this is my birthday week and I'm not exactly celebrating.

My sister, whom I visited in Boston earlier this month, is drawing her final breaths.  Her cancer seemed to flare up right after I left Boston, and she is not expected to make it through the week.

I still send her a couple of emails each day, but I don't know if she's able to read them.  I received what is undoubtedly the last email that I'll ever receive from her on Monday. 

She started asking me what I wanted for my birthday weeks ago, and all I could think of was that she had far bigger problems than what to get me for my birthday.  I never really answered.

Today a box arrived at my door from Boston, with my niece's return address.  My birthday is Saturday, but I couldn't wait to see if there was anything in the box from my sister, so I opened it.

It's not totally clear, but I think there's a card from her.  I don't recognize the handwriting on the envelope, but I know she has become very weak.  She wouldn't want me to open it until Saturday, so I won't.  There are wrapped presents in the box, and I think 2 of them are from my sister.

She sent me a gift for my birthday 2 years ago.  She had just been diagnosed with cancer of the tongue, and I couldn't bring myself to open the present for several months.  It was too precious.  It was from my sister, whose future was now in jeopardy.

Heaven knows when I'll open the gifts which just arrived.  I've already opened my last email from her.  The thought of opening my last gift from my sister turns my stomach inside out.


Monday, August 16, 2010

Home again

Most of the people I know go on vacations, at least once a year.  I, on the other hand, go out of town only for stressful reasons, either job-related or illness-or-death-in-the-family-related.  No wonder I don't like traveling!  If I associated travel with fun and relaxation, things would be different.

I just returned from visiting my sister in Boston.  I was surprised to find her much the same as she was during my visit last March.  Her latest CT scan brought disappointing news of spreading cancer.  But really, I couldn't tell.  She seems to be amazingly accepting of her condition of being unable to speak, eat, drink, swallow or breath except through a tracheotomy. 

My nieces (her daughters) who also live in Boston were on vacation (a real vacation, in Provincetown) so I was there to take care of my sister.  The reason it was stressful is because I was not sure what I'd do in an emergency.  I had no car (and didn't want to drive in a strange city, especially one notorious for its traffic) and knew nobody.  But at first, it seemed like a piece of cake.  Sis was acting fine, albeit sleepy, and I thought I'd have a pleasant visit with her. 

Then she dropped the bomb.  When she was at Dana Farber, the famous cancer hospital in Boston, for her appointment a few days earlier, she was supposed to get some prescriptions filled.  Long story short, her daughter talked her into waiting to get the prescriptions filled some other day, which I can't really explain seeing as how the daughters were preparing to leave town. 

Now, Sis wanted me to fill the prescriptions.  She was unwilling/unable to leave her apartment, so I'd have to try to do it for her.  Having had no experience with this sort of thing, I had no idea what to expect, except for an inexplicable sense of foreboding as I set out on foot for the nearest CVS. 

Because Sis normally fills her prescriptions at Dana Farber, CVS had no history with her.  I handed over all of her IDs, prescriptions, insurance cards, and even her CVS card, hoping they'd be able to sort through it all and produce the desired results. 

And sort they did, for a while, and then 3 of the pharmacy employees huddled, with each in turn shooting a furtive glance my way, as if trying to assess whether I was law-abiding.  Eventually the bravest of the trio, the male, strolled back to the counter where I stood.

"Er....this prescription for Oxicodone is the largest amount we've ever seen.  We would never carry this amount, and no pharmacy in Massachusetts is going to have this amount in stock.  Because it's a narcotic, it's going to be really difficult to obtain this enormous amount."

"Do you have any in stock?"

"We have a small fraction of the amount on the prescription."

I took a break to begin texting my sister to see what she wanted (remember- she can't speak).  Did she want me to fill the prescription here, bringing back just a fraction of the full amount of the prescription, thereby forfeiting the rest of the amount?  Or did she want me to have them order it?  Could she get by until Tuesday?  She was indecisive, so I asked the pharmacists to call other pharmacies to see if any had the amount needed, even though they swore that it was futile.

I understand that Oxicodone is addictive, and that's probably why she seemed quite unwilling to take the tiny amount which CVS had in stock.  I never did get her to admit just exactly how much Oxicodone she had left.

Fast forward to Tuesday.  I called CVS at the agreed upon time to make sure the Oxicodone was in.  It wasn't.  This was very bad news, since Sis had stretched out her stash to get by until the Tuesday shipment arrived.  But CVS assured me that it would be in on Wednesday.

It wasn't!  They had no idea when it would be in, since it was "back ordered by the manufacturer, and we did warn you that narcotics are very difficult to obtain...."

By this time my brother had arrived  from San Francisco where he lives, and he had a car to use in Boston.  We had no choice but to try to drive to Dana Farber to fill the prescription. 

I navigated using the GPS on my phone.  We made it to the vicinity of Dana Farber without too much trouble, although the traffic was indeed daunting.  It was not an easy, direct route, and it was a considerable distance from Sis's apartment.  Although we found the vicinity, the hospital itself eluded us and we had to ask for directions several times. 

When we finally made it to the main entrance, I convinced the valet attendant that we were in the midst of an emergency,.and that I had to run into the hospital on a critical errand while my brother sat in the car out front.  Fortunately, he decided not to argue with me and I ran inside where the information lady directed me to the pharmacy. 

The ordeal was far from over.  Once I made it to the pharmacy, I waited in the "pick-up" line.  When I finally made my way to the window after waiting in line 20 minutes I was told that I should have been in the "drop-off" line.  (My frazzled brain had told me that I had already dropped off the *&?^% prescription several days earlier!  And in my defense, CVS had called Dana Farber to set this up, so it really was logical for me to be in the "pick-up" line.)

When it was finally my turn at the "drop-off" window, I was told that this prescription would be filled in an hour.  AN HOUR???!!  I nearly burst into tears as I explained that this was a dire emergency which I had been dealing with during my entire time in Boston, and my sister couldn't wait any longer for her medicine, and my brother from San Francisco was parked illegally waiting for this drug so desperately needed. 

The pharmacist said it would be 15 minutes.

Meanwhile, I had begun receiving angry texts from Sis.  She wanted to know why I flew halfway across the country to see her and then spent all my time away.  She texted, "I don't understand.  I thought you were going to Dana Farber.  What on earth is taking you so long???!!!"

My phone was overheated from being used as a GPS.  It was so hot I could hardly hold it- I half expected to see smoke rising from it.  And now I know that using the GPS function uses up a cell phone battery really quickly.  By the time I finally exited Dana Farber with the huge bottles of Oxicodone, my battery was so low that my GPS was only partially functional.  It took us a really long time to get back to my sister.  We nearly ended up in the state of Vermont, which is nowhere near where she lives.

When we finally delivered the goods, Sis disclosed that she had a new problem.  While we were gone, she had managed to totally screw up her PC.  (She wrote that she was dusting the keyboard when it happened.)  Her monitor was completely disabled.  Sis presented this information to me because I had spent every waking moment during my visit (when I wasn't dealing with her prescriptions) dealing with her computer.  Her daughter (who is close to my age) had set up her computer for her, but had trouble installing Adobe.  So I installed Adobe, after lots and lots of fussing and fiddling.  Then she had software she wanted installed for scanning.  It also proved to be troublesome, but I kept after it until it was installed.  Then she wanted me to scan her entire collection of photographs, beginning with unknown ancestors and ending with now.  So now Sis wanted me to fix her broken monitor, after the harrowing day in the maze which is Boston. 

Had she not been sick, I would have used a few choice words at that point, but under the circumstances, I thought it best to spend my last few moments of my time in Boston fixing her monitor.  Those of you who have had the experience know how frustrating it is to try to figure out what to do with a black screen.  The owner's manual was no help.  I did everything I could think of, including unplugging the entire system a few times, and eventually the monitor came back to life.

I was glad to be able to leave her with a fully functional PC with files backed up and a boatload of Oxicodone.  I hope she can get by without me for a while.


Friday, August 06, 2010

Life lesson

A long time ago my sister mailed me a card. Crafter that she is, usually she makes her own cards, but this one was store bought.  The front featured a print of a painting of two woman sitting across from each other in the outdoor seating area of a European-looking coffee shop or cafe.  I really liked that card, and for a long time I had it on display on my living room shelf. 

I kept thinking that someday, she and I would be those two women, solving life's problems over coffee in a really cool cafe like the one pictured on the card she sent me.

We always assume people will be always available, especially sister-types, who always are.  But life got the better of me, and instead of focusing on making that coffee card scenario come true, I focused on my everyday trivias and worries associated with being a single parent of a rather demanding child, who was demanding because of my spoiling.

The other day I was going through the one last remaining stack of papers that I hadn't tackled when I recently overhauled my house.  I found a notebook I had been using as a diary when The Child was a toddler.  I read with interest my written rant about how upset I was that my sister had moved to Boston and our phone sessions had been pretty much cut off by her new and inevitable focus on her adult daughter whose house she had just moved into.  The lack of privacy meant that even if we did talk, it wasn't like it used to be.

Ever since the child entered my life, it has been at times difficult to find people to talk to.  My former (and all single, like me) friends all slipped away, one by one, as they discovered that now lacked the luxury of any time to myself.  I had no family within 600 miles, but at least for a while, I did have that phone contact with my sister.

In fact, she had moved to Boston because of me.  Over the phone she had told me repeatedly how unhappy she was living in our hometown, and I encouraged her to just leave.  I remember how shocked I was when, after she had moved, she told me that she had done it because I had encouraged her to.  I do remember giving her explicit instructions on how to make it happen.  My life experience, however, has been that people never listen to what I advise.  I never really expected her to listen to her much younger sister!

She lived with her daughter for a while, and I had little contact with her.  Then one day her daughter called me and said that it was too much for her and her husband to have my sister there, and she was trying to figure out a way to break the news to my sister.  Long story short, my sister moved into her own apartment, reluctantly.  It was hard for me to talk to her there, because she only had a cell phone, and our conversations were now being cut short by dropped calls.

She had enjoyed living with her daughter, and I knew she was devastated to have to leave.  Perhaps she felt rejected. 

Then, about a year after the move, I received the news that she had a cancerous tumor on her tongue.  Surgery was planned, then canceled, then she received chemo and radiation, and was told that the cancer was gone.  Phew.

A few months later she called to say that the tumor had returned.  She underwent surgery for 14 hours which included tongue reconstruction and neck lymph node removal.  She had to learn to talk again, and she called my on my last birthday.

It was the last time I heard her voice.  The tumor grew down her throat into her vocal chords and into her trachea.  Unable to breathe, she was airlifted to a surgical hospital in Boston where she received a tracheotomy.  She already had a food tube, so since then, she has been unable to talk, eat, drink, swallow, or breathe except through  the tracheotomy.  This has been her permanent state for months, and it is understood that her condition will never improve.  She continued to receive chemo to keep the tumor at bay, but during her recent CT scan it was discovered that her tumor is now growing around the tracheotomy, making breathing ever more challenging and her future precarious.

I'm flying to Boston tomorrow before dawn to see my sister.  For some reason, that card with the coffee shop picture has been on my mind today.  That coffee date I had imagined for so long with my sister in a little cafe like the one on her card is never going to happen.  Let that be a lesson to us all.