BUY A NOTEBOOK

Take it with you every time you go to a Doctor's appointment. Take notes. Write everything down, even the things that you think you already understand. You are getting so much information and you cannot retain it all. Write down every drug that has been prescribed. When you go from one Doctor to the next, they will need this information.

Write down questions. There is no such thing as a stupid question when it comes to someone's health.

I bought my notebook in the airport bookstore when we were waiting for the red-eye after we got the first call about mom being sick. In one end, I wrote down everything I wanted her to know before she died. In the other end I took all of the notes when speaking to Doctors, Nurses, Social Workers. I kept it in my purse and carried it everywhere until the day she died.

exhausted, overwhelmed and sometimes moved

Mom's at radiation right now. I took her to an early morning appointment with the Orthopedist so Magee is making this radiation run.

I know it's been a while since I've written, Maria pointed that out when she stopped by on Saturday. She said that she hadn't gotten any e-mails so she came by to see for herself how Mom was doing. Mom loves Maria.

I was on my way out the door for a short break from cancer and illness.

I am exhausted.

Lisa and I had tried the escape earlier in the week when I dropped off the rental car at Dulles. She picked me up on Wednesday and I spent that night at her house and we did our make-up and hair watched the Project Runway finale together (if you had seen my "smoky eyes" you would have laughed as hard as Lisa's 3 year old, Eric, did.) The next morning, her daughter Molly woke up with a temperature of 104, so we spent the day at the doctor, the lab and a place that does chest x-rays. In spite of the time at the medical facilities, it was still a welcome break from home, since we had the effervescent Eric in tow. Lisa can make me laugh in the most ridiculous of circumstances and even Molly-with-a-104-temperature is a pleasure to be around.

We gave it another try on Saturday. I went down to Lisa's with another friend named Lisa and we went and had a nice lunch in old town with a fourth friend, Laurie. We decided to walk around and shop in the boutiques. After a brief stop at the first boutique we noticed a whole pack of Harleys parked on the street in front of a saloon. We stopped in for a beer and ended up staying for the whole afternoon. It was a biker fundraiser for breast cancer. We may have been the only people in the bar without leather chaps on. Everyone had pink ribbon pins. One biker chick, a survivor, had organized it. They raised a few thousand dollars while we were there. It was incredibly sweet. And seriously fun. (The sign on the bar said "tips for tits.")

More important than my goal to take a break from cancer and illness, was my goal to get a decent night's sleep.

I slept very well at Lisa's on Wednesday. On Saturday night, I woke up at 3am and had a hard time sleeping again. I felt incredibly guilty for not being home.

I had been listening to Mom sleep every night from the 4th up until Wednesday. Now that she's home, I don't ever really get a deep sleep because she has decided not to "bother" us by ringing the bell in the middle of the night when she needs to get up and go to the bathroom. The radiation oncologist said that between the arthritis and the cancer in her hip, her hip bones are incredibly fragile.

My Mom is a gifted, talented, brilliant and capable individual. We have seen her move mountains. I know it is incredibly hard for her to have to call one of her girls every time she feels like going to the bathroom in the middle of the night. But a broken hip in the middle of all of this would seriously set her back.

I ratted her out to Dr. Smith on Friday and he explained to her that when she gets up in the middle of the night and goes from laying down for a long time to suddenly standing, her potential for a sudden blood pressure drop is heightened.

Even so, she doesn't ring the bell. So I stay up and watch the monitor. And when I see her take the oxygen tube out of her nose, I know she is about to make a run for it and I go downstairs.

When I was away on Wednesday, Magee watched her. And missed two bathroom runs. I asked Magee if she could try again on Thursday night and I told her what time Mom usually starts to get up. So Magee said she wouldn't stay up all night on the phone and she'd set an alarm. Magee has always been a deeper sleeper than I have. And she missed it again.

And Magee is not to blame. Mom is. She won't ring the damn bell so I can hear her over the monitor. So I have to rely on tracking her visually.

And I'm angry.

And I feel incredibly guilty when I am not on Mom watch in the middle of the night.

This morning at 3am, she did it again. I was watching her so I made it downstairs in time. But, I was so angry. I told her, on the way to the doctor's, that if she didn't start ringing the bell, I was going to have to move one of the sleeper loveseats in the room and not leave her alone at night. I will give her one more chance tonight and then I will cramp her style even more.

And I am overwhelmed because this is not a well-organized process. The doctors don't tell you everything...you have to go in armed with lists of questions. It is all incredibly mysterious and you have no idea what questions to ask. And Mom has been told that it is Stage IV and she has been told that it is in her hip bone and tail bone, but she chooses not to hear that.

Her positive outlook is really awe-inspiring. She has so much fight in her.
But they are talking about starting chemo this week and that is going to kick her ass.

(On Friday, Dr. Smith did mention that his goal with chemo is remission and that seemed to be the one word that Mom and Magee and Maura recalled from the meeting. Mom is talking about how she hopes her hair grows back in - curly and the odds of her living long enough for her hair to grow back are incredibly slim.)

But incredibly slim does not equal impossible, so I also cling to that glimmer of hope.

At her appointment with the Orthopedic Surgeon this morning, they took an x-ray. Dr. Bobrow (who also looks like a movie star) said that he wasn't going to do anything about her hip unless something catastrophic occurred. He said that the degradation caused by the arthritis did not appear to have worsened and it didn't make sense to put her through the ordeal of surgery and recovery unless something happened to her hip. He said that they treat the patient, not the x-ray, and that as long as she isn't in any pain, they don't want to rock the boat.

She came home and told Magee and Maura that he didn't see any cancer in her hip. And I had to say "That's not what he said, Mom. What he said is that your arthritis has not worsened. He didn't comment on the cancer except to ask if they had started radiating the hip yet."

Maura's face sank. Mom got quiet for a few minutes.

And I am the voice of reason.

And I am, once again, overwhelmed by being the one who has to be the bearer of bad news.

There is the whole other issue of my life on hold. For me, it's a no brainer. I'll take a leave and stay with her.

For her, if I stay, I am saying to her that I don't believe that she will beat this. And she has guilt about Magee and I being here.

So I will go back to San Francisco this weekend and pretend that my life is normal. I already have a ticket to come back here in mid November. So I will use the three weeks there to get all of my ducks in a row. And if she is kicking ass, I will come back once every three weeks to get her through her chemo appointments. And if she is getting her ass kicked, I will come back and stay.

And, secretly, I am relieved at the prospect of a few weeks of possibly sleeping through the night.

I bought a new ipod and some running shoes. Getting out in the late afternoon and making a loop through the neighborhood is really good for my soul. When I am not using the ipod, it is in Mom's room on a speaker. A few years ago, one Valentine’s day when I was first living in San Francisco, I made a mixed tape for Mom. She calls my dog "Filthy McNasty" so I called it "Filthy Mc Nasty's songs for a Mother." I picked songs that express how I feel about her, songs that I remember her singing to me when I was little (like Simon and Garfunkel's - O Cecelia) and songs that expressed how I felt about myself (so she could understand that, in spite of the rough patches in my life, I am strong and happy). I loaded the ipod with some of those songs and fight songs (like Bonnie Raitt's "I will not be Broken") and new love songs like Jack Johnson's "Better Together." She listens to it while she does her puzzles.

I listen to it when I run and I have become the crazy woman running through the neighborhood laughing at one minute and sobbing the next.

My friend Carisa lost her mom to Breast Cancer a few Novembers ago. On the calendar, it's probably been close to 5 years, but it seems like it is still so fresh. Carisa ran the Nike San Francisco Marathon yesterday. It has been a long journey for her because her previous attempt was foiled by an injury. But she did it yesterday. And she held her mother, my mother and our friend in her heart while she ran.

And I felt it. 3000 miles away. Like an incredible prayer. I can't say anything more about it right now, because the sweetness of her effort brings me to tears.

I am incredibly moved by the love and support that we are feeling. A 26.5 mile run one day...a baked ham on another. We are truly blessed.

So...this week...radiation and chemo. And next week my dog and my job.

TAKE A DEEP BREATH

my mother loves all of her children equally, unconditionally and uniquely. in some ways we are very similar, in others we're light years apart. what we all share during this time is mind-numbing fear. and, as a result, everything is amplified and we are getting on each others nerves.

we're all freaking out. and we are all so focused on making sure that mom gets everything and anything she needs as soon as she needs it that we have no energy left to be sensitive to each others pet peeves.

i pick up 12 empty cans to every soda i drink. i have been stranded without toilet paper on multiple occasions. i can't understand why used, crumpled kleenex can't ever make it to a trash can. (i may even be doing something that is annoying someone else. i know it's highly unlikely, but i'll consider the possibility.) i take a deep breath. i remind myself that this stuff is petty. i would walk through fire for these people and they would do the same for me.

and if that doesn't help...i go here.

overheard today...

(while i had the physical therapist on the phone that was tucked between my ear and my shoulder, and while holding the 116lb dog by the collar, and while simultaneously trying to let the eucharistic minister out the front door)...

Sister #1: "you are a vicious bitch"
Sister #2: "really? if you look HEINOUS bitch up in the dictionary, you'll see your picture."

it wasn't hard to overhear...since they were screaming.

nice.

how was your day?

mom is asleep in the sun room. while she sleeps she does one of a few things. right now, she is rubbing the shoulder that has been hurting for weeks. sometimes she is pointing to things and giving instructions in her sleep. she gets into rem sleep and makes graceful gestures with her hands.

i saw my cousins last night. timmy turned 40 and his one brother and four sisters all came to celebrate with him. they all adore my mom. each has a special relationship with her. for example, phillip, the oldest, is the doctor who visited her in the hospital last week. when he graduated from med school and started his own practice, mom worked for him for free for a few years, setting up his office so he could get on his feet. she and margie have quiet giggles about inside jokes, sheila and megan both have been crying all week. mom has been up to new jersey to see megan's kids in their school shows more than anyone else in the family. we were telling stories and taking care of each other. i don't remember if it was sheila or margie who told me that wowo, our grandfather, was designing buildings with his hands when he was dying.

it's so funny...because mom and wowo have the same hands.

when we came home and told mom about all of the conversations we had with our cousins, she was so happy. she and her older sister (the mother of the six) are thrilled that we all really enjoy and care for each other.

(well, almost all of us...vicious and heinous bitches excepted.)

mom's good friend, elly, came by to give mom communion. aunt jane came by so maura and i could make a run to target and to the grocery store. erin came by with an unexpected and much needed ham (our dinner) and aunt mary anne came by for some quiet time with mom.

buzzy is building a ramp outside the laundry room door. he is my sounding board when the others are deep in their drama.

we all love my mom madly. we all handle things differently. maura and magee explode and buzzy and i put our heads down and keep our hands busy. we get things done.

i am so glad buzzy is back. he has been my rock. he is productive and positive and sensitive. i have missed him so much.

a few weeks ago, i had a really great week with cat and max and jesper in florida. and i am struck by the similarities between taking care of someone who is just coming into the world and someone who is preparing to leave it. you are hyper aware of everything they eat and drink and you keep track of all of their bodily functions. and you are so happy and proud and slightly frightened when they stand up by themselves.

cat called me the other day to give me a pep talk, and i asked her what kind of baby monitor she was using. (she has this amazing monitor she uses to keep an eye on max.) it has a camera and a microphone and you can see and hear what he is doing while he is napping and you are going about your routine.

with max, i found so much joy in every little thing he accomplished. he sat up by himself the week that i was there. and he stood up in his crib by himself.

with mom, it's the same. i watch what she eats, i know how much she moves throughout the day, i know if she has pooped. she teases me about it. but it is all so important to me right now.

maura and i set up the monitor today.

i am sleeping in a bed tonight for the first time since the 3rd. and i have the little monitor by my bed.

and i still watch her breathe.

YOU HAVE ABSOLUTELY NO IDEA WHAT YOU ARE DOING

you are so focused on the minutes right ahead of you that you can't even think about tomorrow. so when they tell you she can come home tomorrow your joy is quickly followed by panic. she can't use the stairs easily. where will she sleep? how will she bathe? how do you go about getting Oxygen tanks? it's overwhelming, uncharted territory.

ask for help.

we passed a social worker's office in one of the hospital hallways near the radiation wing. my sisters and i all went in there armed with questions. we learned that the hospital that cared for mom had a nurse on mom's floor who specialized in "home health" or "home care" and made many of the arrangements for us. there are a great deal of resources for "home care" and the range of services is incredibly broad.

fortunately, most of the care and equipment we needed for mom was covered by insurance.

Going Home

Friday the 13th . 1:00am

I can't say that today was more surreal than any other day this week. All week I have felt like I am walking through jello.

She is no longer sharing a room. We suspect that the bad sharer, had claimed her "latex" allergy because she had seen that Mom's latex allergy had rated her a room of her own. She was chagrined when she learned that the latex allergy had earned her a similarly allergic roommate. After 24 hours of Mom's parade of well wishers, she requested a room of her own.

Yesterday, they told me that we may be able to bring Mom home on Friday, so I went to her house and scrubbed down the sun room. It was good to be out of the hospital for such a long time and cleaning was therapeutic.

When I came back last night they said that I would not be able to stay in the room since it was semi-private. (They hadn't seen me sneak in the night before.) Then, our nurse said he had an idea. He came back about 15 minutes later and told her that he would have to put her back in the private isolation room because of her latex allergy. And since she would be in a room, alone, I could stay. He also noted (with a wink) that Mom wouldn't have to pay the astronomical private room charge that her old roommate was paying, since there were no longer any other latex-allergic patients to double her up with.

Mom and I spread out in our suite and watched the TV without earphones.

This morning I woke up, had breakfast with Mom and watched the morning news with her. Father Bill and Mary Theresa O'Donnell (another sort-of distant cousin, another doctor, the "Chief Hospitalist" here at Sibley) came to visit. Father Bill makes Mom laugh. He gave us a blessing before he left and said a prayer that she would be able to feel better soon so she could get out of here and do the things for people and to people that she is used to doing.

She had a good night last night and is feeling even better this morning.

Dr. Smith came by and sat with her for a few minutes. He said that all of her doctors had gotten together and gone over her treatment and that they all agreed that she should continue with the radiation as planned. After radiation, they would probably start chemo and, somewhere in there, they may intervene and do something about her hip.

The fact that they are thinking about doing something about her hip is huge. This means that, for all intents and purposes, we may have come out of the "weeks" prognosis.

She told Dr. Smith that, while she realizes that they need to be cautious, every day they make her feel better is a day she believes that she can beat this thing.

Maura came by and I went home to meet the delivery people. We had a hospital bed and a bedside commode delivered to the house. They will give her the walker when she leaves and the oxygen will be delivered tomorrow when she is released. They also told us we need a "transport chair." They said it was $50/month to rent and $380 to buy. So we decided to buy one and give it to one of our family's favorite charities when Mom is through with it.

While I waited for the furniture delivery I took a crack at cleaning the kitchen. Mom's house backs up to fields and she has a seasonal field mouse problem. I found a recently expired mouse behind the refrigerator. Yuck. I oiled the sideboard and the table and chairs and then the delivery truck came.

The man who delivered the bed/commode was lovely. He set everything up and showed me how to work the controls.

Then I went with Maura to her OB appointment. I got to hear the baby's heartbeat. That was a beautiful thing.

Maura and I then went to get the transport chair and a bench that Mom can use in the shower. We found a nice transport chair for $259 and it's in the trunk of the rental car. Then we went to Target to get extra long twin sheets for the hospital bed.

We have extra long twin beds in the "boys room" at the beach house...but all of those linens are back at the beach. We bought a few sets of sheets with cowboys on them and a few with blue stripes. We also bought antibacterial soap, mattress pads, a lap desk, laundry detergent, etc.

When we got back to the house, Magee was there. I asked her if Aunt Jane was expecting someone to relieve her soon (Aunt Jane spends a few hours sitting with Mom every day so we can get other things done.) She said she didn't know, so I ran by Aunt Jane and Uncle Johns for a change of clothes and to pick up my bags and then set off for the hospital.

Mom had just completed another MRI for her hip when I arrived at 8:30. Aunt Jane packed up her knitting and headed for home. She has almost completed an entire coat for her youngest granddaughter this week. (Jane's youngest grandchild "Katie C" is in New Mexico while my cousin Johnny finishes his residency. Johnny says they will call her "Casey" if I will agree to pay for her college education. I told him that, if he is selling naming rights to his kids in exchange for tuition, we can change Joshua to Casey. He agreed. Poor Josh.)

Mom was in good spirits when I returned. I pulled up a chair, threw a blanket over my lap and rested my feet on her bed and we watched "Ugly Betty" together and talked about our day.

She is sleeping very well right now. She has been a little more wheezy the past few nights...but her sleep has been deeper.

Saturday morning 8:00 am

I woke up yesterday morning and had breakfast with Mom. Dr. Bodurian came by and she was sitting up eating. She had respiratory therapy and was poked and prodded, but everyone commented about her getting out that day and she was thrilled.

No one else came to sit with her until noon so, at that point, it was pointless for me to go home because we were planning on bringing her home in my rental car. It seemed much more comfortable than Maura's cabriolet or Mom's wagon. I was hoping that people were late because they were mopping the kitchen floor or cleaning the family room. I could only hope at that point. The entire week and a half has been en exercise in letting go of control.

I got a lesson on how to use the portable oxygen tank from the respiratory therapist. She has grown attached to Mom and came by to see her no fewer than six times today.

Her radiation appointment was supposed to be at 1:45, but inpatient appointments take a back seat to outpatient appointments. While we waited, Mom put on her street clothes for the first time since last Wednesday. She looked great. All of the nurses and attendants who came by made encouraging comments to her. She was glowing.

I almost had a melt down when she put her shoes on. I can't tell you how many times, a week ago, I looked at her shoes and wondered if she would ever be putting them on again. What a difference a week makes.

We took her down to radiation at around 2:45. Maura checked her out of the hospital and Magee went home to meet the oxygen delivery people. She was told that the doctor, Dr. Gollimudy - her radiation oncologist, wanted to see her after her treatment. Maura, Mom and I sat down with Dr. Gollimudy who told us that the MRI from last night had shown, conclusively, that the cancer was in her hip. She asked Mom to stay a short while longer to have a "set up" for radiation to her hip.

The radiation set up entails lining up the equipment based upon the MRI and tattooing dots on her skin (almost like registration marks for printing) so they can line up the radiation properly and minimize damage to healthy tissue.

That was the first time it was confirmed to Mom that it is in her bones.

She said "okay" and went off to get her tattoos. I called Aunt Jane and Maura went outside called Magee, fought with Magee, and had a good cry. In Magee's defense, Maura is tremendously hormonal right now. They both seem to be intent upon pushing each other's buttons lately.

Maura said she didn't want to be home alone, so I gave her a grocery list.

Mom came out of set up. She was understandably less excited than she had been before getting the MRI results, but she was still elated about going home. Freddy, who does the transport for radiation, came out to roll her to the car.

Freddy is our hero. Mom's radiation started a week ago, Friday, when she couldn't even hold her own head up. Freddy showed up with a gurney and gently moved her from the bed to the gurney. Every day he took us down for treatment, he treated Mom with such respect and compassion. He never said much, but he made sure that we had a place to sit while we waited, kleenex - if he happened to pass by and see tears, he even stopped and held the elevator once so I could run back to the room and get Snicker (Mom's stuffed dog from Ellen Bodurian) so she could have something warm and fuzzy to hang onto while she was radiated. (Snicker has had five radiation treatments, a CAT scan and a bone scan.) Freddy has a calm and quiet way about him, and he is grace personified.

We got Mom into the car and took off. I told her I felt like Thelma and Louise.

We talked about her hip. I told her that Maura had completely misunderstood what Dr. Gollimudy was saying and had passed on the misinformation to Magee. Mom said that most of what the doctors had been telling her was a blur. She suggested that we sit down and all talk about what we all thought we had heard. I told her that I thought that would be the blind leading the blind and that we should sit down and write down all of our questions and then sit down with Dr. Smith. (Aunt Jane and I have been secretly conspiring to get in front of Dr. Smith outside of the hospital setting and get all of the facts in front of Mom. She is almost ready to hear them, because she is starting to ask about them.) She agreed.

We are home now.

Buzzy was over last night measuring the laundry room step so he can build a ramp. He will be back with the boys today for construction. I have treats for the boys. I can't wait to see them.

Mom ate an entire english muffin with cream cheese and apricot jam last night. She had been talking about it in the car on the way home. Afterwards, she asked me if I could toast it longer tomorrow. I am happy.

Mom is in the sun room. A room she designed. It is truly sunny.

I can hear the oxygen compressor running.

Her real dog, Beastley, is being incredibly gentle with her and is curled up by the side of her bed. Snicker is on her bedside table.

I am trying to cut the cord again. It was hard for me not to sleep on the floor by her bed. I slept on a love seat in the family room instead. I only heard the rhythm of the compressor change once last night. I tiptoed over and she was sleeping soundly.

At about 7:15 I heard her get up. I went in and made sure she could get the walker and then I stood back and watched her take off. She's been getting herself to the real bathroom. I think she is determined not to use the bedside commode.

I worry now, every time she walks. Dr. Gollimudy said that the cancer is eating away at her hipbone and that she is concerned about fracture.

I busied myself in the kitchen while Mom was in the bathroom.

Then Maura came around the corner. Her room is upstairs at the opposite end of the house. She said "I heard walker so I came down."

And, again, I am reminded that I am not alone.

I am remembering to be in the moment. Each day is full of moments of fear and frustration and sibling angst. They are outnumbered by moments of grace.

We are still scared and confused and we are hopeful and grateful. And Mom is still showing us the way.

Normalcy

I'm in the cafeteria now and the occupational therapist just rolled mom by.

She gave me the Queen Mum wave.

She and Maura are off to the rehab building so mom can learn how to use a bench that will help her get into the shower at home.

I am waiting for Clancy, the discharge nurse, to talk to me about what we will need to put in place to bring mom home.

Dr. Picone (a.k.a. Dr. McDreamy) says that we may be able to bring her home before the weekend, so I have a lot of work to do.

What appeared to be fluid on her lungs in a sonogram was revealed to be collapsed portions of her lung by the CAT scan that she had last night. The bad news, of course, is the collapsed lungs. The good news is that she gets to avoid surgical intervention and will be able to come home sooner. We will try to bring her home Friday afternoon.

Things are starting to feel a little more normal. I know, because I have started to notice again that my sisters are, at times, driving me crazy. The fear has dissipated enough that I am no longer completely consumed by it.

Mom is sharing a room now with a woman who has never learned to share. If anything crosses the curtain line...the woman gets up and makes a stink and pushes things around. She calls the nurse if anything is touching "her side." It is almost comical. I might have to start charging her when she walks through mom's side to use the bathroom. Mom said I probably wouldn't be able to stay there last night...but I told her I'd sneak in and she'd never know the difference. It worked and mom’s roommate didn't realize I was there until she got up this morning to use the bathroom.

Part of me is annoyed...the other part of me recognizes that it is making mom fight all that much harder to get away from here.

When Dr. Smith told me a few days ago that the bone scan was clear...he said the bone scan was clear except for her hip and he thought that was because of the arthritis. He said he wanted to talk to her orthopedist to see if he had done an MRI of the hip. It turns out that the cancer has metastasized in her hip bone.

The good news is that she has been fighting and each day she looks exponentially better than she did the day before.

Dr. McDreamy said "months" yesterday instead of "weeks" and that is really encouraging.

Maura's baby is due in early January. I am hoping she can hold on at least that long.

It opens a whole new can of worms for me, as in "when do I go back to California?" and for how long? But those problems are akin to "i have so much money...i have no idea how i am going to spend it." Having to figure out how to manage an abundance of a good thing is a really great problem to have.

I continue to be bouyed by your e-mails and voicemails. Thank you for the long distance hugs. We can really feel them and they help more than you will ever know.

LIVING WILL a.k.a. D.N.R. a.k.a. ADVANCE DIRECTIVE

talk about these things when you are healthy. know what your loved ones would want you to do on their behalf if they were to be so incapacitated by illness that they could not communicate their wishes. tell them what you would want. put your wishes in writing. find out if it needs to be witnessed and/or notarized in your state. there are many great resources for forms.

tell a few people where they can find your written wishes.

we knew what mom wanted. we were lucky that we were never faced with making that decision because we didn't actually have the piece of paper to protect her wishes until a few days before she died.

have hope. preparing for the worst does not preclude you from hoping for the best. and knowing that you will be able to care for your loved one in a way that honors their wishes takes a little bit of the weight off of your shoulders in an incredibly challenging time.

do this while you are healthy so, if illness strikes, you can focus your attention on your hopes instead of your fears.

Comfort Food

monday, 11:00pm

in D.C., comfort food is orange.

cheese puffs, macaroni and cheese and scalloped potatoes unlike any i've ever seen before...swimming in a sea of what could only be velveeta.

the first few days, i could only eat soft foods, and they seemed to hurt the inside of my mouth. the next days, i was eating solid food (if velveeta soaked potatoes count as solid food) and i was still so unfamiliar with eating that i kept biting the inside of my lip.

you know things are seriously wrong when i am unfamiliar with eating....seriously

tonight, on my shower break —a.k.a. my daily 3-hour escape from the hospital— my uncle john made lima bean soup. it might have been the best meal i have ever had in my life.

my drives to and from Aunt Jane and Uncle John's are along the same roads i've driven all of my adult life. but this time, no one is going fast enough and the lights are not turning quickly enough. and i look into the cars next to me at the lights and i see normal people going about normal business and i know that they don't look over at me and see the girl who is racing to get back to the hospital. but i want them to. i want them to drive faster and get out of my way. and i want the pedestrians to stay on the sidewalks when i am driving by. i've left the hospital for three hours each day...and each day it seems like an eternity.

mom had a really good day today.

she ate some bacon this morning and then the games began. radiation was followed by physical therapy which was followed by an aspiration of fluids from her lung, followed by an x-ray, followed by respiratory therapy.

she asked me to bring her her crutches so she could try to stand up and get herself to the bathroom. she is kicking ass and taking names.

she wants to go home and she is fighting for it.

there was a moment when we were standing outside of the aspiration suite when her breathing was so labored and her sleeping face was contorted in so much pain, that i was worried that we might lose her at any minute.

i have gotten some really good advice over the past few days. i have been reminded that there will be plenty of time to feel the loss, and that now is the time to feel the love. and to live in the moment. i keep repeating that to myself when times get rough.

when i thought that she might stop breathing at any moment, i panicked, because we don't have the DNR in the charts because of the holiday weekend. i asked uncle jude about it late on friday and he hooked me up with someone in his office who will send us the durable power of attorney and the medical power of attorney.

(when your mom is sick, it doesn't suck to come from a family full of attorneys and physicians.)

so we were standing there this afternoon, Aunt Jane holding one of her hands, me holding her other hand in one of my hands and running my fingers through her hair with the other, and we did not realize until we talked over our lima bean soup this evening, that we were both thinking the same thing,"if she stops breathing right now, i will wait ten minutes before i press the button to get help." and we were each hopeful that the other felt the same.

somewhere in the course of our normal lives, we have all talked with mom about what she would want and what we would want, and we really need the piece of paper.

later today, when magee and maura had returned from maura's doctors appointments, mom asked us to talk to my cousin Margie about a medical power of attorney. we told her that we had talked to Marg on friday and Jude after that and that Mrs. Hicks, from Jude's office, was sending something over for her to sign in the morning. she said that was good. she said that it had been really important for her to be able to decide when it was time for people to stop beating up on her mummy and that she and her sister, mary anne, had that piece of paper and that made everything much easier.

i spoke with dr. smith this evening and he says her bone scan was clear and they haven't gotten the results of the tests that they did on the aspirated fluid. he says that keeping her moving is good and that keeping her hopeful about going home is good, too.

today, i was in the moment. and i held her hand, and ran my fingers through her hair, and rested my feet on her bed and she held onto my toes.
mom and i have our rhythms. we have fallen into a different one. this one includes lifting her up and putting cold washcloths on her forehead and other unmentionable gestures. and no matter how she is being poked and prodded, when her eyes meet mine, she looks at me with so much love, i can't feel anything but peace.

About My Mom

I keep singing random lines from a K.T. Tunstall song over and over again in my head. Sometimes I catch myself singing it out loud.

The line I seem to be singing the most is "I want you between me and the feeling I get when I miss you."

And I want to keep her here because I am afraid of the gaping void I am going to feel when she is gone.

It's like we are dealing with the moment to moment stuff and surrounding her with people she loves and telling stories and sometimes just sitting in silence...and somewhere in the distant background I hear the beginning of this big sucking sound that is threatening to come closer and take her away from me.

The days have started to run together, but a nurse comes in every morning with a dry erase marker and writes the day and the date on a board across from her bed.

Friday was full of Doctors and treatments. She started radiation and now Maura can't be within 4 feet of her because of the baby. Mom reaches out towards her and tells her she's hugging her from afar. The night after the radiation was rough. I was sitting at the foot of her bed watching her sleep and it looked, for the first time, like there was a battle being waged under her skin. Her sleep was fitful and she was burning up. And she is fighting so hard.

I feel like a jerk sometimes because I feel like I know, in my bones, that there is no hope. But she fights. And then I feel hope when she looks better. And I think about what an ass I am being and how wrong it is for me to not believe in the possibility of her beating this.

But Dr. Smith, the oncologist, came by on Friday and told us that the cancer is not at Stage III as they originally thought, but Stage IV. And that it is not a matter of "if" as much as is a matter of "when."

The radiation is being used to prevent the immediate dangers of her bleeding out or developing pneumonia.

Mom doesn't know it is Stage IV yet. She had told Magee on Thursday that she thinks she can beat this. So we have not told her. And I'm not sure if that's right either. But mom is the one that usually answers those questions for me.

Everything is so hard. And maybe this is part of God's plan. That the first time I have to deal with these things without asking her, I am at least given the gift of being able to look into her eyes while I try to figure things out for myself.

Another line from the song that repeats in my head goes "I've got to be unconditionally unafraid of my days without you."

I keep saying I and ME because these are my feelings, but Magee and Buzzy and Maura are all sharing this pain with me.

Yesterday, we had a full house.

My girlfriends from high school all know and love mom. She refers to many of my friends as her other daughters. Maria brought us all breakfast and the key to her house. She lives five minutes away from the hospital on the street where my Great Grandparents lived. I told Kara that mom needed high protein, fatty foods and the only thing she had touched was bacon, so she drove down from Philadelphia yesterday morning with four pounds of bacon from the Italian Market. Erin was here with a bag full of coloring books and playing cards.

Last Wednesday morning, while I was still back in my life in San Francisco, I had to run an errand in the city. On the way back to the office I stopped at the drugstore for toilet paper. As I was walking down the aisle, I saw Crayons out of the corner of my eye. And I stopped and grabbed a box and put it in the basket. I heard my mother's voice saying, "there's nothing better than a brand new box of crayons."

Later that day, all hell broke loose and I was on a red-eye to D.C.

Lee talked me through packing — thank God—otherwise I'd be sitting here in the cafeteria with a bathing suit on. And I threw the crayons in the suitcase.

So when Erin called and said "I think you need coloring books," I laughed. She brought a big bag full of books and paints and the 64 box of Crayons, which mom always refers to as the "stadium pack" because it looks like the crayons are sitting in bleachers overlooking the coloring that is being done.

Mom is asking me how everyone is doing and is happy to hear everyone is well. She asked about Pen and the girls on Friday and was talking about her collection of Christmas cards and on Saturday they sent her a picture of the girls standing on either side of a big heart that said "Missy." She loved that.

The highlight of the day was a visit from my nephews, Liam and Seamus. They had come straight from the Cub Scout parade so "Poobah" (their name for mom) could see them in their uniforms. At first they were a little uneasy about the tubes and the monitors...but they soon forgot about them and delighted her with their stories and questions.

"Poobah" as in "Grand Poobah" is also what they call her at the office. Rebecca, one of the nurses at the office (another "other daughter' with whom mummy has a sweet and special bond), had come by early in the morning with a plastic Viking hat so mom could have some kind of crown. They brought in a bedside commode and my cousin, Lea, decided that anyone who sat on the commode had to wear the "Poobah" hat. Liam and Seamus were both delighted by that.

Aunt Jane and Uncle John and their youngest, Lea and his wife Jody were here most of the day, too. I went and got a shower and packed up some dinner while they visited.

Everyone left late in the afternoon so mom could get some sleep.

She wanted the TV on, and they were playing some kind of Tom Hanks marathon. The one where he gets stranded on the island was showing. It was perfect, because he doesn't talk for most of the movie. So I was lying in my makeshift bed on the floor and all I could hear were the ocean noises that were in the background of the movie.

Aunt Jane and Lea came back and sat with us for a few hours while I rested. I have little breakdowns throughout the day...and when I looked up through the bedrails and saw Lea watching her sleep with tears in his eyes, I pulled the blanket over my head and cried for a while.

She has been so remarkable to so many people. She has an amazingly huge capacity for love.

Ellen, Dr. Bodurian's wife, came by on Friday morning and gave her a stuffed animal. She has been clinging to it ever since. It has had a bone scan and radiation with her.

Yesterday was the first day that I saw the fear in her eyes.

And I continue to sing the song inside my head:

"So throw me a rope to hold me in place
Show me a clock for counting my days down
Cause everything's easier when you're beside me
Come back and find me
Whenever I'm falling you're always behind me
Come back and find me
Cause everything's easier when you're beside me
Come back and find me
Cause I feel alone"

I am so lucky that she is my mother.

EMERGENCY TRAVEL

some airlines offer "bereavement" or "emergency" fares if you need to get to your family member quickly*. if the agent that answers the airline's 800 number does not help you with this, do ask for a supervisor.

magee and i flew home on united airlines. we needed to provide the name of the hospital, the phone number and the name of the admitting physician in order to qualify. the tickets were very reasonably priced and the return was set up so it could be changed without penalty (if used within 60 days.)

most major carriers will work with you.

jet blue and southwest, my usual carriers, were much more expensive and did not offer emergency fares.

*in case of the death of a loved one, you will need the name and contact information for the funeral home.

My Magical Mother

Friday, October 6th - 1:10am

To the very few of you I’ve been able to talk to in the past 36 hours…thank you so much for your incredible words of kindness and support. I feel like you are holding me up right now. And to those that I haven’t been able to talk to yet, please forgive me for telling you this way…I have reached the point where I cannot bear to say the words out loud any more.

My mom’s in serious trouble. She has lung cancer.

She had her heart procedure a few months ago and that went really well. She was taking tests and doing labs in preparation for hip surgery when she came down with what seemed like a chest infection.

She works for an amazing cardiologist who has been hand picking amazing specialists to help manage her care. He sent her to a Pulmonary specialist who did some tests a little over a week ago and then did something called a bronchoscopy last Thursday. By Friday, they had a good idea that she had lung cancer (they had identified a tumor of about 3” in diameter) but she wanted to do more tests so that she could have all of the information sorted out before she told us kids. She had an MRI and a PET scan scheduled for today. Her plan was to get all of the facts, figure out a plan and then sit down and tell Buzz and Maura in person while Aunt Jane (her best friend since high school) would come out to California to sit down and tell Magee and me.

Her plans were blown out of the water yesterday afternoon. She was in incredible pain and asked Maura to take her to the emergency room, Ed Bodurian (Cardiologist, Protector of Missy) told her to come to Sibley in the event that she needed to be admitted.

I’m too tired right now to go into detail about the back and forth, the waiting, and the leaking of information that ensued. But ultimately, Magee and I ended up on a red-eye and arrived here at the hospital at about 7:30 this morning.

When I walked in this morning, I sat down and held her hand and she opened her eyes and said “I’m sorry, sweetie. I was going to tell you when I knew more.” And she is lying in bed, barely able to speak and concerned with nothing more at that moment than making sure that I am okay.

The first Doctor we met today was Dr. Smith. An Oncologist. He said the calcium level in her blood is too high and has introduced medication to manage that. He said they would know more after the MRI and PET scan.

The Doctors are all good to me. They repeat things and spell things and explain things while I take copious notes. And they go beyond the clinical and give me big picture information and answer what may be really basic questions with detail and kindness.

Maura had gone home the night before so she could put Beastley in the kennel this morning and Buzzy stayed into the night last night and came back to meet us in the MRI area this morning.

Mom can barely speak. Her lung capacity is diminished and the cancer has paralyzed her left vocal chords, but she is still amusing herself. The MRI technician asked her if she knew why she was getting the MRI and she told him that they were hoping to find out if she actually has a brain.

The MRI was followed by a CT scan (which replaced the PET scan since she had been admitted — insert long insurance bureaucracy story here) and by the time she was wheeled out of the CT scan area she had all four of her children following her gurney like ducklings. She asked the technician who was wheeling her around to make sure he had room in the elevator for all of her fans.

Monsignor O’Donnell (aka Father Uncle Bill) stopped by her room while she was getting her MRI so we missed seeing him. He takes an exercise class here at the hospital once a week. He’s about 80 years old. He baptized me and buried my grandparents and my father. I never thought mom might go before he did…but it looks like that is how things are going to be. And to have him still here to help pull us through this is an incredible gift. He and Mom are thick as thieves.

Aunt Jane arrived soon after the MRI and she and I spoke with Dr. Picone, the Pulmonologist, while Magee, Maura and Buzzy took a well-deserved break. Dr. Picone has reviewed the MRI and the CT scan results and told us that Mom does, in fact, have a brain. He also said that her brain is clear of cancer and that she has surprisingly little atrophy for someone her age. (Thank you to the New York Times Crossword Puzzle.)

The tumor has more than doubled in size since last week. It is blocking an airway and, as a result, the lung beyond the blockage is behaving like it has collapsed. He cannot tell if the cancer is in the lung walls until they do the PET scan in a few days.

He does not think that the pain in her shoulder is a result of any metatstasis. Again, they’ll know more next week. He told her that she needs to do chemo and radiation and that a radiologist (another one hand-picked by Ed) would see her later today or early tomorrow.

He did not ask her to think about radiation/chemo, he just told her she should do it and she said, “Okay.”

Since her return from the tests, she has been struggling to get some rest. The pain of her hip and her shoulder and her back, combined with her drastically decreased lung volume are incredibly overwhelming. She was put on a constant morphine drip yesterday and at about 2pm today they switched it to a 2-dose an hour push-button system. Tonight, the nurse checked the box and said that she hadn’t pushed the button since around 3:30 so that was good news. She is also taking percoset and antibiotics and anti coagulants and medication to boost production of her red blood cells.

She ate two pieces of bacon this morning. Ed says she needs high-protien, fatty foods and has had them add an appetite stimulant to her medications. We gave her an Ensure shake this afternoon. She had a tiny pece of a Snickers bar, too.

Buzzy had to leave at 3:30 so he could get home and take care of the boys since Julie had a class to teach tonight. He was operating on 2-1/2 hours sleep so I hope he is getting some rest right now.

Magee and I left late in the afternoon and went over to Aunt Jane and Uncle John’s to take showers. We were still in the clothes we had been wearing for almost 24 hours. It feels good to be clean.

When we returned, a few of mom’s girlfriends from the office stopped by and one is probably cooking up a storm as I write this and will likely be here bright and early tomorrow morning with a home cooked, fresh, fatty breakfast for mummy.

Mom told us to go home and get some rest and we ignored her and she is secretly pleased. We’re falling into shifts and making sure that she is never alone.

Aunt MaryAnne, her older sister, came for a few hours in the evening and watched her sleep for a while.

She is getting amazing care here and the nurses are really phenomenal. They are being incredibly attentive and have managed to find the exceptional balance of helping her in what is clearly her most vulnerable state ever, while preserving her dignity.

Last night she didn’t get any sleep, just a few “fuzzy moments.” Right now, she is resting comfortably. Magee has just fallen asleep in a chair and Maura and Buzz are off getting their rest so they can be here again early tomorrow.

That is what is happening.

This is how I am feeling:

The feeling of undescribable, doubled over, silent-screaming loss has been buried under the moment to moment decisions needed to make her shoulder feel comfortable one minute and her lips feel less dry the next.

Her arms are bruised from injections and her skin is so soft and she has my grandfather’s hands.

And when I hold her hands I am acutely aware of their warmth and the life that is still in them.

And every time she pushes the morphine button I feel like I’ve had the wind knocked out of me and I have to pretend I am looking out the window or examining the ceiling so I can keep the tears from rolling down my cheeks.

When I am just about to crack, I walk outside and check my messages and make a call if I can. Your calls, your questions, your offers to help, your reminders that she and I are loved, these are the things that get me through while I steel myself to go back in for more.

I found myself consumed with contempt for her girlfriends from work, because I felt like they were taking up some of her very finite time. They were so lovely and she was happy to see them and I just wanted them to go away. Irrational, yes…but I felt it so strongly and had to have an internal dialogue with myself and remind myself to be gracious.

We are not looking at a fight for survival, here. We are looking at a fight to minimize her pain and suffering. Even the chemo/radiation is being used to that end. We need her to get some of her lung capacity back.

Right now, we don’t know if we are talking about weeks or months. We should know more tomorrow. And after the PET scan in a few days.

And mom told Aunt Jane that she didn’t think she’d be able to sleep tonight because she is so excited. Because her kids are here. And she is so happy.

But she is finally asleep now. And I have a pillow and a blanket on the floor. And she likes to sleep with the TV on, so it is casting a little light on her. And from the floor I can see through a gap in the bed railings and watch her chest rise and fall while I listen to her breathe.

And I don’t want to sleep, because I don’t want to sleep through a minute of the short time we have left. And I may never hear her beautiful, soothing voice again, because it is already gone. But I am memorizing her amazing blue eyes and the way that she smiles with them and my grandmothers nose and I am shocked at how tiny and fragile she looks and I am in awe of the fact that she is still making sure that everyone around her is okay.