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.