Friday, March 27, 2009

I-75 is the seventh ring of Hell

I was born in this city, raised in this city and except for the decade or so I spent in the D.C./Baltimore area, I've lived in this city. But as hard as I try, I cannot drive in this city.
I don't know where anything is, how to get there or how one road relates to another, and quite frankly at my age I have no desire to learn. I say this as an illustration of how much I must love my sister, D., that this morning, in pouring down rain and rush hour traffic I drove from I-285S to I-20W to (arghhh!) I-75N to make my way to Piedmont Hospital to see her.
Just two nights earlier, unbeknownest to me, she spent 24 hours in the ICU. I just assumed they'd moved her from the ER to a regular room, but she'd only been out of intensive care since yesterday.
I arrived at room 227 with irises and lillies in hand (per the florist's suggestion I didn't bring anything overly fragrant in case the patient had "smell issues"), and I was expecting to see my sister pale and frail with tubes sticking out of her arms, nose and chest. I was pleasantly surprised to see she was up and moving, though understandably slower than usual. Her color was good and she gave me a big hug. About five minutes into the visit the nurse came in to give her more shots than I've had in my entire life, including one in her tummy.
The best news for me was that her sense of humor was intact and she seemed ready and eager to fight this beast.
What landed her in the ER, it seems, was not the cancer, not the RSDS but rather an infection from where she had the biopsy of her adrenal glands. The pain killers she was on weren't effective against the pain from the infection. Don't ask me where my sister (she of the GED) got her medical degree, but she decided at some point that if she took more blood pressure medication perhaps the pain killers would work better. This caused her blood pressure to drop to a dangerously low level and the doctor told her that when she was in the ER she was "circling the drain." I may not be the sharpest knife in the drawer when it comes to metaphors but I know that's not good.
Our visit wasn't long enough since I had reenter traffic purgatory and pick my kids up from school. She seemed happier than I'd seen her in a while, cute in her pink P.J.s and adamant about wanting to get a second opinion and to see if clinical trials were available at Emory. We made plans to get her fitted for a wig next week and then hugged goodbye.

Wednesday, March 25, 2009

A missed call and the riot act is read

While I was at the office today I noticed I'd missed a call from D., but fortunately she had left a voice mail. She had received the recent letter I'd sent; I'd included a small white gold band for her to wear while she was going through treatment so she would know I was with her in spirit. She also laughed and told me to cancel the hair appointments I'd made for the two of us for next weekend. The nurse had told her all her hair would be falling out in about 14 days. Damn! I thought I had longer than that to get her to a salon. Bless D.'s heart, but she is in dire need of a haircut. When there's no money that's not exactly something high on one's list of priorities. Her hair is really too long for a 52 year old woman and it's been colored and is basically dry as hay. Nina at the salon had told me they had an excellent conditioning treatment and I'd hoped to talk D. into a shoulder length cut and a color closer to her natural color. Oh well, guess I'll talk to her and see if she wants to go the wig route.
I tried to call her back a couple of times with no luck, but fortunately R. called me back late in the afternoon. Ohhhhh! He was in a state.
Seems Debbie was in a tremendous amount of pain. What's tricky about her pain managment is that she also suffers from Reflex Sympathetic Dystrophy Syndrome (RSDS) which can cause her to have an episode which results in her blood pressure going through the roof. RSDS is what's known as an "invisible disease" with no outward symptoms. From what I've learned the body experiences some sort of, often minor, injury but has a pain response that is disproportional to the injury...meaning a pulled muscle could feel like you're being boiled in oil. Stress is one of the things that can trigger an episode, which is why D. hasn't worked in three years. She pulled a nerve in her neck several years ago when she couldn't catch her breath. Of course, now with the lung cancer diagnosis, we all wonder if that was the reason she couldn't breathe.
R. said she has three different doctors (one treating her for the RSDS and two from the hospital in Macon where she's had testing done) who all said she should be on Fentanyl for pain and would be happy to talk with Dr. J. Well, apparently Dr. J. did not concur and that set R. off.
R. is a good ol' Southern boy and he basically told the doctor, right there in front of every one in the office, since he was such a know-it-all, R. was going to take her to the ER and get her admitted and Dr. J. could just deal with that! Suffice to say R. didn't use the most genteel of language with Dr. J. and jaws were dropping to the floor.
R. did just as he said...they have D. on some heavy drugs for pain and are getting ready to move her to a room and keep her for observation. I could hear her in the background sleepily saying "Hey, Sheri. Hey Sheri."
Bless you, R.

Next post: I-75 is the seventh ring of Hell

Monday, March 23, 2009

Kindness all around me

Becoming the de facto advocate for my sister has put a crimp in my political activism. I'm sure the White House and Congress aren't missing my kvetching one little bit.
D. had her first chemo session today. I haven't spoken with her but her boyfriend R. called me around 7:30 p.m. to say they were back home after having spent the entire day at the infusion center. He warned me that we have to be careful not to bring germs/infections around D., as her immune system is severely compromised.
R. is a good guy. He has his own issues, but he's taking on the responsibility of caring for D., making sure she gets to all her appointments, takes her medication, etc. In my book, that makes him eligible for sainthood.
Found out today that the company that makes Oxycontin does have an assistance program, that if D. qualifies, she'll be able to get a month's supply of meds for around $25. That would be such a help.
The last few days I've been overwhelmed by the kindness of folks that don't even know my sister. When trying to write on my friend V.'s facebook wall, I somehow announced to the world that my sister was sick and have been showered with concern and prayers.
My neighbor S. told me of a place where D. and R. can stay for free during treatments if they don't feel like driving the hour and a half to get home, and S.'s friend, P. knows where D. can get a wig for free if she wants to go that route, when her hair falls out, as Dr. J. has told her it will.
(Doctor's don't know everything, right???) And when I walked out of work today, my boss pressed a wad on money in my hand, to help my sister pay for her meds. What an angel!
I also got a touching email from my best friend today. She and her daughter have had to deal with the recent death of both a beloved family member and a friend.
They've come up with some strategies for dealing with grief that are so wonderful they need to be out there in the blogosphere. They said I could share:

We've been talking about how we aren't given time to be sad in our world. Someone dies, loses a job, gets sick, gets divorced and we say suck it up! move on! get a grip! They used to wear black for a year when someone died, now we take a day and head back in, and if we're sad, we get a prescription to make us happy again. People used to go to bed early, stay in bed all day, drink lots of liquids when they got sick. Now we say, take a pill and hand in that report first thing in the morning. E. and I say: bullshit!
Your sister is dying...of course you're broken hearted! We expect you to be devastated: no excuses, no apologies.
Here's our strategy for dealing with modern day sadness; feel free to use it.
Wear p.j.'s as often as possible. Slipper socks, too. Drink gallons of tea: hot or cold, sweet or unsweet. Avoid everyone you don't really like. No being polite just to have company. Eat chocolate. Find a cat to sit on your lap. Buy yourself flowers. Lots of them. Avoid any sappy, sad movie that might come your way. Watch a lot of "Friends." Sleep as much as you like. The idea that sleep is an escape is true, but we believe escapes are o.k. If someone asks how you feel, say: sad. And tell them why. No apologies, no excuses. I love someone and they are hurt/gone/leaving soon is nothing to apologize for. It's the reason we're here.
And take your time. Ask yourself why you're here, is there a god, who am I, where is more chocolate. They're slow questions that flow naturally from loss, and they give our life meaning. They help us heal and grow and make us strong, even if we don't like the answers.
Finally, wrap yourself in a warm blanket of blessings. Look out the window and see the buds springing, the dog taking a drink from the pond, your little boy hanging from a tree. Listen very carefully to the end of the day. Build a bonfire and sit silently until it dies. Hold your almost grown daughter in your lap and stroke her hair. Wake your husband up in the middle of the night just to talk. Take it easy on yourself. Let the phone ring, forget to wash the dishes, don't bring home any work, tell the kids you're not taking them to Disney, because you're sad, and it's o.k. to be sad. They need to hear it from you, because no one else is going to say it. And then when they say something absolutely silly, laugh. That way they'll now they're a comfort.
One day you will feel better, though 5-10 pounds heavier that when you first found your sadness. And the next sadness that comes your way will remind you of this one and it will comfort you to remember the times spent in p.j.'s, drinking tea, sitting with the cat, sleeping.

Next post: A missed call and the riot act is read



Pardon our mess

Because of the way blogs display posts (from newest to oldest) my husband has attempted to teach me how to link you, dear reader, from the first post to the next, should you desire to have a read.
Let's begin.

First post: The light bulb moment

Sunday, March 22, 2009

The Backstory

I'm the oldest of five kids so, yes, I suffer a bit from the "oldest child must take care of everyone" syndrome. When I was thirteen and my youngest sister was only 6, we were taken from our parents and parceled out to relatives, foster homes and group homes. Needless to say, it was hard to maintain the sibling connection but as we've gotten older and theoretically more in charge of our lives, we've tried to strengthen that connection. So while I'm a big sister to many, for purposes of this blog, I'll focus on D., because this is her story.
Growing up D. was always the "cute one" while I was the "smart one." D. got attention from boys, I got attention from teachers.
While I was growing up, I got good grades, went to college on a scholarship, worked on my career, married a great man when I was in my mid-30s and had two kids a couple of years after that.
Like most people I was selfish with my life in my 20s and 30s, trying to find my way and rationalizing that my siblings all had lives of their own.
But D.'s life was very different.
Our mom died when D. was 15. D. was pregnant at the time and went to a home for unwed mothers.
She didn't finish high school (though to her credit, later got her GED), married early and had another baby. The marriage was abusive and she eventually got out. She later had, at least for a while, a seemingly happy second marriage and another baby. But she smoked too much and drank too much, possibly to deal with things in her life she kept only to herself. I do know when I got married in 1990, all my siblings made it to Baltimore for the wedding and she brought vodka and orange juice along for the drive and the glass never left her hand.
So to put it mildly, she's had a lot of crap in her life and just seems to never catch a break.
So this cancer diagnosis?
One more crappy thing she has to bear.

The light bulb moment

I've been thinking for some time I might like to start a blog, but I had a hard time nailing down what would be fun to write about.
Well, I know what I want to blog about now, but it's not going to be fun.
My sister, D., was just diagnosed with incurable lung cancer. We're all still in the shock stage at the moment but gearing up to help her however we can.
I'll be using this space to chronicle her journey for her. I'll try to keep the "woe is she" stuff to a minimum and concentrate on keeping her pain free and enjoying life for as long as possible. cheers.

Next post: The Backstory