Friday, April 29, 2011


My sister was there with the girls waiting for Rob and me.

It felt so strange to be home, like so much time had gone by. Things were strange but also totally familiar.

Here's Lily's heartbreaking get well soon card I found in a pile of papers. It has a drawing of our house and the hospital connected by a tiny winding road with the words, "I love you. I miss you. you are so far away." Uggh.

Here's EJ's medicine graph. I was spacey and had a very hard time remembering when to take my meds and if I had taken them so she made me a helpful tool, that I would forget to use.

So many lovely cards, a healing basket, a couple hearts, chickens and a special lamp made of Selenite that has healing properties and glows beautifully. It is heavy and solid and was sent by a dear family friend in Sedona.
It all cheered me whenever I went by the dining room table.

Here's me drawing up my Zofran to help with the nausea. The visiting nurses came and explained everything and gave me all the syringes, alcohol wipes and directions I could ever need.

My sister left me this healing affirmation and my dear friend brought me new Virgin of Guadalupe to watch over me from my Reiki Grid.

My hands looked so strange without my rings, but I wasn't ready to put them on yet. I didn't quite feel like myself, yet. Not. Quite. Ready.

My sister and mother took turns helping me out at home and driving me to doctor appointments. Friends brought amazing plentiful food, called and checked on us. I felt so tired and blessed but also a bit mopey and sad, like there was a gray veil between me and the shining world that I should be so happy to be part of again.

I listened to Lucinda William's Sweet Old World:

over and over again. It reminded me of all the reasons I was so lucky to be alive and distracted me from all the catching up I had to do.

Then I got this marvelous book in the mail from a friend and I was lost in it for at least a week. What fun, staying up late and distracting myself with the thrilling story! I didn't think about all the bills, my still deaf ear, going back to work, piles of mail and mess and emails, or the long term effect of my illness on my children (turned out they were a bit angry and upset about me disappearing one morning and not coming back for 6 days!)

The weeks went by in a blur. I took naps when I could. I sat around with my girls. Cookie came back from my sister's where she had a lovely time. My nausea passed as the days went by. My midline came out, floomp! and I got to take antibiotic pills for three weeks. Slowly, I was getting stronger.

Going Home

My third blood culture came back negative, so I could go home! No more Strep A germs were lurking in my blood. Suddenly there were discharge planners and visiting nurses and things to sign. I was going home!

A specially trained nurse came to put my midline in so I could continue to take IV antibiotics when I got home. She had to clear out the room and get dressed in a gown, mask and hat to perform the sterile procedure. Even I had to wear a mask and try not to cough or sneeze while the nurse stuck a really long IV tube into the vein in my elbow, then fed the tubing into my vein all the way up to my shoulder, then she secured the tube in place with special tape.

Rob packed up my flowers and clothes and I headed out by wheelchair. I was feeling frail and perplexed. I felt like I entered the hospital when it was winter and leaving, it felt like spring. The air was brisk and I felt confused by all the noises. With the one ear still only hearing about 10% it was difficult to know where noises were coming from.

I was craving a chicken kabob from Amanouz, a restaurant in Northampton where we always used to go before we had kids. Rob was a bit puzzled why I wanted to go there, we hadn't been in so long and I wasn't eating much, but he was glad to be bringing me home and pleased I was eating. It was almost like I had lost awareness of the more recent years, and it seemed like Amanouz was the place to go.

I ate only a few bites of the chicken kabob, but it was perfect. The peppermint tea was delicious; warm and strong. I looked around at the lively restaurant and to the street outside while Rob ate and then I checked my horoscope in the local paper. I love Free Will Astrology and was glad I found an old paper and could read my horoscope from the week I missed.

Sagittarius (November 22-December 21) Acupuncturists identify an energetic point in the ear called the spirit gate. If it's stuck closed, the spirit is locked in; if it's stuck open, the spirit is always coming and going, restless and unsettled. What's ideal, of course, is that the spirit gate is not stuck in any position. Then the spirit can come and go as it needs to, and also have the option of retreating and protecting itself. I'd like you to imagine that right now a skilled acupuncturist is inserting a needle in the top of your left ear, where it will remain for about 20 minutes. In the meantime, visualize your spirit gate being in that state of harmonious health I described.

I read it a few times and showed Rob. Even he was struck by the talk of the left ear. I wondered what my illness was telling me. But I was tired and ready to see my kids.

We took the highway home.

Saturday, April 16, 2011

Springfield 2

My bed was wheeled onto the window side of the room with a view of a tall brick building. This time I had a roommate. I was more stable now, but family still took turns staying with me. My mother lightly sleeping, spending the night beside me on two chairs with a folded blanket on them. My sister giving me ice chips and replacing my cool cloths. Rob holding my hand.

My sister set up my altar which included two battery powered candles which caused a few employees to run into the room panicking, thinking that I had open flames going with all the oxygen around the unit, but after a while everyone got used to it. The candles threw a gentle light at night (one of the other nurses asked my nurse if I was having a seance.) The nurses were amazing, mostly young and energetic. They had to be, to work on this very busy floor! They seemed to be having fun, though. They were kind and funny and worked to get me what I needed to get better. They were so good to me. If I wasn't a nurse already I would have wanted to become one after a week in the hands of all my different nurses. Doctors came and went and they, too, were working make sure the antibiotics were working and I was improving every day.

But I felt miserable. My ear was draining sticky yellow onto my pillowcase and down the side of my head. I was feeling exquisitely nauseous all the time and heaving regularly, but nothing was coming up because I hadn't eaten for days. I had a treacherous cough that woke me up and then made me gag and retch. My foley catheter was pulling and tugging and it hurt when I moved. When I had to go to the bathroom they brought me a bedpan. It felt wrong to take a dump lying down in bed! All these this was minuscule compared to the fact I had almost died, but I had missed much of that drama because I had been too busy being delirious or sleeping.

The infectious disease doctor came to check on me, apparently I had met him in the Baystate ICU the night when I was admitted, but everyone had been masked and I wasn't all there, so I didn't recognize him. He was lovely; smart, kind, personable and very clear. He gave me a strong look and said, "They called from Franklin and woke me up in the middle of the night Wednesday to consult. I was very worried about you. It's good to see you here. You look much better than you did that night." He told us that he had figured out it was the strep A once we informed him the girls had strep at school.

He said to Rob, "It's a good thing you dragged her in when you did. Another day and I don't want to think about what would have happened."
Rob shook his head and we laughed. He admitted ,"I tried to go to work. I was on my way out the door."
"Well it's a very good thing you brought her in when you did."
We were all quiet for a moment, imagining if he hadn't.

Then he told us that Strep A grows very fast but is killed efficiently by antibiotics and doesn't effect the heart. I was on Ceftriaxone and Vancomycin for IV antibiotics. I was off the antivirals and antifungals. The spinal tap had looked positive in the beginning but turned out to be negative for bacteria, just positive for inflammation which was from the ear infection being so close to the brain. My fever was gone and they were going to run some more labs to make sure the infection in my blood was gone. I was in the hospital for 6 days and I remained on Springfield 2 the rest of my stay. In the beginning I slept alot and my family was there, but as I got more perky my family finally left me alone sometimes and went home and got some

rest and continued to help Rob at home with the girls.

The first time I was alone I was resting and then had one of my coughing fits which led to gagging and retching. It must have sounded pretty wretched to my roommate on the other side of the curtain. I heard a voice pipe up from the elder tiny Latina woman who was in the bed next to me.

"You OK, Baby?"
I didn't answer. I figured she was on the phone.
She asked again. "Baby, are you OK?" Maybe she meant me.
I asked tentatively through the curtain, "Do you mean me?"
She answered cheerfully, "Yes, baby. Everything is OK. It's going to be OK . Just pray to God."

I was pleased to have someone keeping an ear out for me and calling me baby. Later she sang a prayer for a while. A tune I knew but I couldn't quite catch. It was very soothing.

I found myself humming and singing this Enya song from Lord of the Rings.
I couldn't get it out of my head.
I had downloaded not long before this fiasco.
I wished I could hear it, but I kept forgetting to tell Rob to bring his ipod.

My night nurse for most of the nights was very encouraging. She had been sick with meningitis earlier in the year and had been delirious, too. (I didn't have meningitis, but our symptoms were similar) She made my mother and I feel better when she talked about not recognizing her husband and trying to sneak out of her hospital bed at midnight to "go to the library" One night she came in and noticed my chest was covered in a rash. It was about an hour after the Ceftriaxone was given and I was vomiting really intensely. She called the doctor, but he said that no one is allergic to Ceftriaxone and he wanted to keep me on it because It killed both the strep A and also got rid of meningitis (which he didn't think I had but he wanted to be extra cautious.)

I couldn't keep down water but I was terribly thirsty. I tried ginger ale and it was amazing! delicious! cold and fizzy! At first I took sips, then I could empty half a glass. I hit my call bell frequently for cold ginger ale. My day revolved around when to ask for ginger ale, tasting the ginger ale! Then still feeling nauseous and retching after a bit. They took my foley out. Hallelujah! I was so glad to have it out, even though it burned like hell when I peed that first day. (I will have exponentially more sympathy for my patients when they complain about their catheter and the discomfort!) So now I could get up with my IV pole to pee. It was a shock to see myself in the mirror. I was really puffy from the IV fluid. The left said of my face was much bigger because I had been lying on that side non-stop to let my ear drain. My hair was matted and messy. I looked terrible! Thankfully, a lovely aide named Ramona came and gave me a full bed bath with lots of soap, she even combed my hair. I felt so much better. I was so tired and weak the day revolved around tiny things, like, "Should I get up now to pee or should I call for more ginger ale? What if they take a long time to come when I call and then I'm in the bathroom ? Hmmm" and then I would nod off for a bit. Other interesting parts of the day were if I could reach the phone when it rang (usually not), napping with my mouth open and getting shots of Heparin in my belly twice a day to prevent blood clots because I was lying in bed day and night. The time went so slowly. Rob tried to get me to watch TV to distract me and make the time pass but it gave me a headache and daytime TV was painfully depressing. The days were so long. I couldn't believe I had once been an active busy person who complained that there weren't enough hours in the day!

It also brought back memeories of being sick when I was pregnant. I get terribly nauseous. When I was pregnant with Georgia I had to be hospitalized three times and went home with a midline IV in my inner elbow that gave me IV fluids and medicine from a little backpack so I could live without drinking. I. Could. Not. Drink. It was torture, but the glory of motherhood had fogged up the memories. This time as I lay there with my mouth salivating in that state of horrific pre-puke, the minutes going achingly slow, my body growing weak after days in bed I thought, "Oh I can't have another baby. I can't put myself and my body through that again! In many ways I had let go of having a third baby for practical reasons like money and time, but it hit me that I could not endure that suffering again.

I felt really guilty for having scared everyone half to death. They had to endure the horror of not knowing if I would make it through the infection alive. Horrible! I can't imagine how that must have felt. Lucky for me, I was removed from a fear of dying. I felt very peaceful. I knew I was in very competent hands and knew everyone was doing whatever could be done, but I also felt an almost pleasant resignation that if I was to die, it would be OK. I would be fine. It seemed light and easy, like the transition would be sweet for me. I was so lost from the world I didn't fathom what it would mean to those around me. Once I came out of the intense sickness and delirium I felt guilty for being OK leaving this world, for forgetting my children even existed! Uggh! I felt confused. I didn't know what season it was or what was going on the in the world. When Rob talked about the puppy I was puzzled. I had no attachment to her. She didn't seem real. Days went by and I couldn't see my kids and I didn't talk to them on the phone. I was leaning over a puke bucket most of the time and didn't feel like I could talk to them without sounding depleted and frightening.

I had a new roommate who was quite sick. She was about 70 and had many health problems I couldn't help but hear about. She was on fluid restrictions which meant she could only drink 2 cups of water a day. She was so thirsty (and pissed off that she couldn't drink) that she rang her call bell constantly and asked every one who came in to get her ginger ale. She yelled at staff walking by, "NURSE!" and they'd poke their head in. "Please I need a glass of ginger ale!" Usually they'd say, "I'll ask your nurse." with a smile and then come back to tell her no. But sometimes they would say OK and she would be so excited, "Thank you Thank you!" but it would never come. Someone must have stopped them in the kitchen. I felt guilty when the nurses and aides passed by her with my nice cold cups of ginger ale.

I had another rash with the ceftriaxone and they had to take me off it and put me on meropenum, which is really pricey. When the infectious disease doc came back he was pleased I was looking even better and we talked about the antibiotics I was on. I asked him about going home and he said, "Oh, I don't know anything about that, but you'll be going home with a midline and you'll be on antibiotics for a while." I was shocked. Another midline! I just wanted to be done! "Will I be able to work?" I had disappeared from all three of my jobs quite dramatically and wanted to get back to work as soon as I could. He laughed and leaned against the windowsill, "You can work with the midline, but you won't be able to. You're going to be very tired for a while. You were very very sick. Your body is going to need to rest." Rob and I looked at each other. Sigh. But Rob was thrilled I might be coming home soon. I was overwhelmed by the idea of dealing with anything other than sleeping, getting up to the bathroom and starting off into space.

Doctors and nurses came and went. I kept telling them I was nauseous and they kept trying to find something to help me. Finally they doubled my zofran IV dose to 8 mg every 4 hours IV push and that helped a teensy bit. Then I remembered when I was so incredibly nauseous in the hospital 4 years earlier when I was pregnant with Georgia that eating helped even though it was the last thing I wanted to do. So I started to eat pineapple and watermelon. My family was so happy! My sister brought me lovely fresh pineapple and I ate it all. Then I started to eat yogurt and strawberries. It was quite a victory. Every time I ate, I felt a tiny bit better. The zofran and the eating seemed to be helping so I could sit up and talk a bit.

Rob came in to visit and I told him he had to pay the bills quick or they would turn off the electricity and that the mortgage was due. He has no idea how to pay the bills. I had to talk him through where the checks were and which bills to pay and which to ignore. He was under so much stress. He had to keep working because we needed the insurance and he had already used up all of his sick time this year, being sick himself or staying home with the girls. If he took anymore his benefits would start to be put on hold and then who would pay for my hospital stay?! So, he was working, minding the children, worrying about and visiting me, answering phone calls and talking with people who came to drop off food. He was on total overload. He went to get cultured for strep, as everyone in the family did, and he asked for some anti-anxiety meds. Something to help him cope with this difficult time. The doctor said no. "You're having situational anxiety because you're under tremendous stress. That's normal." Rob was so disappointed. "I ask for help and he said no! Everyone else is on meds for everyday life! I just didn't want to feel so much for a little while."

I was finally upright enough to talk with the girls on the phone. It was marvelous to hear their voices. When my family came to visit I could now sit up and talk and get all the news from home about who brought food and who called. My friend Julie came to see me and brought me cards and gifts from friends that went right on my altar. She also brought a poem that was perfect and made me want to see the moon and breath some fresh air.

Towards the Light

By moonlight,
or starlight,
or in the sun’s bright rays,
I journey,
guiding my way
by keeping
to the light
as best I can.
Sometimes all seems dark,
then I remember
how the poppy turns its head,
following the sun’s passage across the sky,
then rests in night’s cool shadows,
bowing in thanks
to whatever power
makes the stalk
stand straight and strong,
drawing deep from its roots
a wine dark love.
In moonlight,
the garden glows,
silvering the poppies.
And even by starlight
you can tell
shades of darkness
if you try.
So do not lose heart
when vision dims.
Journey forth
as best you can—
bloom when you are able,
rest when you must,
keep your faith,
keep always
towards the light.
(couldn't find the author)

I was getting tired of the hospital environment. I took a shower across the hall with help from Rob. When I shuffled out into the hall I saw how big the floor was and how many call bells were ringing. So many sick people. Such busy nurses. My roomate had been in the hospital for over a month. I couldn't imagine. Outside my window was a tall brick building filled with sick people. It made me sad. Also, I was tiring of the roommate situation. Her doctor had taken her off fluid restrictions and she was out of control. She was asking for coke very 15 minutes and then she was up all night. Her children got after her during their loud raucous morning-long visits, "Ma! Take it easy with the soda! That's not good for you and no wonder you're not sleeping. How about I get you some water?" But she was stubborn. "Go get me a Coke, damnit!" Also I wasn't getting much sleep. She had the TV on home shopping all night and the nurses would come to clean her up a couple of times in the middle of the night. I would wake to lights, talking and very strong unpleasant smells. I would fumble to put a tissue with peppermint essential oil up my nose before I started to gag.

It was time to go home.