Lives in Pieces: Vale et memini (Goodbye and I Remember)

oranges-in-baskets

Note: this entry was originally posted in January. I am reposting parts 1-3 since so much time has passed between those entries and part 4, which I will post tomorrow.

Part 3: I Dream of Oranges

It’s funny, but the time between the baby showers in February and Alexis’s fourth birthday in July just seemed to pass so quickly. In June, we had Caitlin’s three month portrait made. She was wearing a tiny rosebud print dress with pink trim on the sleeves and neckline. I remember that the sleeves were just a bit tight on her chubby arms. She had this extra crease in her arms like a lot of chubby babies do. I used to love to play with that crease in her arms.

On July 7, we had Alexis’s birthday party. I remember it was the birthday of  Barbies. She had asked for several Barbie items, and the family pitched in and bought them. I remember taking one picture of the Ken doll sitting in a lawn chair, flying a kite. I told Alexis that Ken needed to go find a job and stop relying on Barbie to support him. Then we all started putting Ken in these ridiculous poses and taking pictures of him. It was pretty hilarious. Caitlin was sitting in her little blue chair on the floor, taking all of this in: the bright color of the balloons, the noise, the packages. I took a picture of her sitting in her chair. Everything seemed so utterly normal.

Pat and Winn weren’t at that party. I really don’t remember why. We didn’t see a lot of them that summer. Or maybe we did. A lot of that summer has become a blank to me. The last invitation I remember that summer were friends of Paul’s inviting us to go sailing, but we had to turn them down because Caitlin had some kind of virus and was throwing up. She was throwing up so much that we ended up taking her to the emergency room on Saturday. We saw a resident. He said that it was a virus and gave us pedialyte and sent us home.

On Monday, August 23, I was to begin my new job teaching English at Old Dominion University. It was a pretty exciting time for all of us. We had our two little girls. I had the job of my dreams. Paul was doing well at his job at the medical school. It seemed that life our lives were charmed.

That Tuesday was when our lives began to disintegrate, and they never recovered. When I went back to work, my mom and Paul’s mom were going to share in the responsibility of watching the girls. I was in my first faculty meeting when I was called out for a phone call from my mother. I was really perturbed that she would call me at work. I picked up the phone and it was the pediatrician’s office, one of the nurses who I knew very well. She was speaking calmly, too calmly. She said that she was going to put my mother on the phone.

I remember driving to the Children’s Hospital of the King’s Daughters, which was just down the road. I remember meeting Paul; the medical school was across the street from the hospital. I remember a CT scan showed blockage. I remember falling down a wall. I remember calling Kathleen in northern Virginia at work and saying the words, “Caitlin has a brain tumor.”

whole-orange

An operation to remove the tumor. Seven hours long. Pat was there with fresh oranges, talking to me. The tumor was the size of a small orange. Later, I would write a poem comparing the ependymoma to an orange. I remember nothing Pat said to me. Too many people were there. One of the women from the medical school gave me a rosary; it was red, like garnets. I just remember noise. I just remember wanting all of them to go away.

After recovery in the PICU, Caitlin was sent to the Progressive Care Unit. After a few days, she had another operation to install tubing which was going to be used for her medicines: chemotherapy, whatever she needed.

I was trained on how to flush and clean the lines because Caitlin was going to be allowed to go home. The plan was that she would come in for overnight stays when she needed chemo. We were going home on Labor Day weekend. In the meantime, ODU had given me the option of giving up my classes for the semester or taking a reduced load. I took a reduced load down to two classes. I was actually still hopeful that everything was going to be all right. After all, Pat had survived.

Caitlin stayed home for six days. I came home from school to find my mother completely distraught. The back of Caitlin’s head, which had been shaved for the operation, was swollen, the incision puffy. I called the neurologist, and he said to take her to the ER at the hospital. She was readmitted to the PCU with a staff infection, that dreaded infection that hospitals give their patients, one of the oxymorons of a sterile environment. The neurologists had to drain the fluid from the incision every morning.

They put Caitlin in one of the two private rooms in the unit, which had a pull-out bed because the nurses knew that I would be sleeping at the hospital whether or not I had a bed. I began to bring in personal things: a teddy bear, dresses. I didn’t want her to wear a hospital gown. The nurses, who already knew me from our previous stay, indulged my every whim.

Each morning, I gave Caitlin a bath, and I put her in one of the beautiful dresses that Pat had given us. I fixed her hair, at least, the hair that she still had. We took pictures of her. From the front, you couldn’t tell that they had shaved her hair in the back. She still looked beautiful with all of that dark hair. Each day a different dress, a different bow. I brought in more and more personal items. I turned the sterile hospital room into her bedroom. No one stopped me. The hospital closet held so many dresses, her red dress, green dress, blue dress. I brought in her booties and lace socks.

After her first round of chemo, everything changed. Her body became so weak, and she threw up repeatedly, non-stop. The nurses paged the neurologists. One of the younger men in the group showed up and said within range of my hearing, “She’s throwing up. That’s what they do when they have chemo. I don’t know what you expect me to do.” The next day I changed her primary care from the neurologists to the oncologists and had a note put in her chart that that particular doctor was never to touch Caitlin again. The oncologists gave Caitlin something for her vomiting and took blood samples every few hours to check her white cell count, which wasn’t good.

Her main oncologist, who happened to be a friend of mine, called me from out of town to give me the bad news. He told me that he had never seen a count that low from a chemo treatment. They were going to suspend her chemo for now and rethink how to treat her cancer.

jhospital-monitorThat night, her monitor alarms kept going off. I had a new nurse who did not know Caitlin’s case. She would come in, look at the machine, and look at Caitlin, and say, “Well, she’s breathing just fine. I don’t know why the monitor is going off. There must be something wrong with the machine.” I asked her if she was sure. She looked at me as if I were just one of those pesky mothers. The other nurses had already learned to take my questions seriously as by then I knew how to reset all of the monitors, knew how to read results, and knew my daughter’s body signs instinctively.

In the morning, I gave Caitlin her bath, and I was rocking her when I happened to notice that her nails were blue. I knew that meant that she wasn’t getting enough oxygen. I had another new nurse, and she was nowhere to be found. I waited another half an hour. I had asked for a chest x-ray the day before, but no one had followed through, and between all of the chaos, I had forgotten about it. Now, I was kicking myself for not being more assertive.

I went out to the nurse’s station. They took one look at me and asked me what was wrong. I told them that Caitlin’s nails were blue. Within two minutes respiratory therapy was in the room and so was a portable x-ray machine. Caitlin had pneumonia, pneumocystic to be precise. The kind of pneumonia that AIDS patients get because their immune systems are so depressed.

One of the nurses who knew me the best told me and asked me about the pneumonia, and asked me to pack up all of Caitlin’s belongings. They were transferring Caitlin to PICU. I called Paul at the medical school. He and a friend packed up all of her things and met me in the waiting room for PICU. We couldn’t go in right away. When we were allowed in, Caitlin was in a hospital gown, and she was on a respirator.

There would be no more dresses.

end of part 3

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Your Call Will Be Answered In The Order In Which It Was Received

Bureacracy and Me: Not a Good Fit

Being On Hold Does Not a Nice Lola Make

Did you know that Glaucoma is the third leading cause of blindness in the U.S.? Did you know that exercising in cold weather has its hazards, like icy patches in the road if you are running? Do you know why I know these little tidbits? Because I stayed on hold an inordinate amount of time today trying to get through to the prescription center with whom my insurance is affiliated. It was wonderful. Every few minutes, a nice woman would come on and tell me that I needed to “please continue to hold as [they] were experience heavy call volume and someone would be with [me] soon.”

operatorI thought that that was terribly nice of her, to speak to each and every person on hold, who, if they were anything like me, were approaching the 20 minute wait time. But I really needed to speak to these people. I needed a new card, and I needed to find out how much longer it was going to take for the processing of the prescriptions that my doctor had called in on December 22. Boy was I in for a surprise, and it wasn’t a good one.

Live human being comes on the line, very nice human, only to tell me that there are no prescriptions in process for me. The last thing she has for me was in September. I patiently explain to her that I was standing next to my doctor when he was telling his assistant who was on the phone with my prescription provider at the time as to what to call in, and that was on December 22, the day of my appointment. Sorry, nice human being, apologizes, but we have nothing for you, and as a matter of fact, you account closed on December 31, so we cannot send you a new card or process any more prescriptions . . .

Long pause on my end . . . I’m sorry . . . what did you say?

Your account closed on December 31.

No, that’s not possible.

Still nice human: I understand, but perhaps you need to check with your provider. You can have them call back, and we can expedite your order.

Fine, through clenched teeth, trying to remember that nice human is only doing her job and has in no way caused this situation. I’ll have someone call you back. I hang up the phone and call my health insurance provider. On hold for about 20 seconds. Live human being, also nice asks for my ID number.

I reply, well that’s going to be hard since my wallet was stolen and my card was in it, and I need a new ID.

neon-fuschia-on-hanging-on-the-telephone
Hanging on the Telephone with Neon Fuschia

Oh, how terrible, says Live human, and asks for my birth date, address, all of the info to confirm I am who I say I am and not some nut job wanting an ID from a health insurance company who happens to know all of my bona fides. Oh, happy birthday early, she chimes.

For a moment I don’t know what she is talking about, and then I remember. Oh crap, another birthday, mine, this month. Shit. Great. Moving along.

She tells me I’ll get the card in about 8 to 10 days. I stump her with my next question: So I do have active coverage then?

Um, yes you do.

So I tell her my plight and ask if she’ll call my prescription provider and verify that I have coverage because I’m out of my migraine medicine, and things are getting critical. She tells me that she would if she could, but she can’t as she can only verify that I have health insurance, and I need to have someone else verify prescription insurance. At this point, I am totally lost because I thought that my prescription coverage was part of my health insurance. Obviously, I am mistaken.

So This Much is True

However, since it was a little past 5 and no one at GW main campus stays a second after 5, so my big plans for taking care of all of this unfinished business are screwed. I hate dealing with this stuff, that’s why I’ve put it off for so many days. I did manage to get Brett’s appointment straightened out, call his doctor’s office to get the letter faxed to his school about his absences, reschedule the orthodontist appointments, and find out that I don’t need an appointment for my stretchy/bendy test at the radiologist’s at the hospital. I know that it’s not called a stretchy/bendy test, that there’s some other name for it, but I figure that’s better than calling it a Gumby test. The point is that I have to stretch and bend and they take x-rays.

So tomorrow, I get to deal with GW Human Resources. I can hardly wait. I can’t hardly wait. Which is it? Which one is worse? If you can hardly wait, does that mean that you can wait forever? If you can’t hardly wait does it mean that you cannot wait at all? I’m confusing myself. The point is that a telephone call to GW Human Resources is akin to “Once more into the breach,” and I’m sorry dear Henry, but I just don’t have the stamina to go into the breach with you and on to St. Crispin’s Day.

But Wait, There is Good News After All

concretecherub013But there is some good news: It turns out that my picture of Caitlin, the one that I’ve carried around for 20 years, was not in the wallet that was lost/stolen. It was in my smaller card wallet. I don’t remember putting it there, so I never bothered to look. Imagine what a wonderful surprise it was for me to find it there when I was looking through my card case to see if I had perhaps lost my Social Security card as well (I had not). 

Finding that picture means more to me than I can possible put into words. It’s just a simple snapshot of me holding Caitlin; she is wearing a pink dress, and everything looks absolutely normal. That’s what is so wonderful about it. It’s before we knew that she was sick, before the operations, before the PICU, before all of the tubes, the intubation, the vials and vials of blood, the respiratory therapists, the neurosurgeons, the oncologists, the nights spent on vinyl furniture. Before life turned to hell. Life was still normal, and Caitlin was just my baby girl.

But that snapshot is one-of-a-kind. I don’t have the negative. I don’t have a copy. So whoever took my wallet, a belated Merry Christmas to you. I hope you really needed the money. We needed it, but maybe you needed it more. I got back the one thing that I truly missed, the thing that I thought was gone forever. Everything else can be replaced, even if it means staying on the phone forever listening to recordings and fighting with bureaucracies. You cannot take away the one thing that would mean nothing to anyone else.

And with that, I’ll close for now. More later. Peace.