The First Snow: A Journal About a Man’s Faith-Based Journey Through Grief

October 10, 2010

October 7 arrived, and Kelly was at the house for a blood draw from Lou to check her potassium and sodium levels, and the hospice furniture arrived at twelve thirty—way too early. Luckily Kelly was here to see this. I was pretty upset. The deliveryman was going to leave the stuff in the dining room for me to drag down the hall and assemble in the room after Evergreen arrived to disassemble and pick up their stuff. Kelly asked the hospice deliveryman to disassemble the Evergreen furniture and take it outside so he could install the hospice furniture so I wouldn’t have to. He complied. Evergreen showed up at about two thirty and picked up their furniture, and I made the bed for Lou while she slept in the chair in the living room. I then vacuumed, spotted the carpet in the living room, hall, stairwell, and family room, swept and mopped the kitchen floor, and then sat down with Lou for a few minutes to rest.

The phone rang at 4:20 p.m., and it was Craig wanting to know if it was all right to come and visit. Lou was happy to hear he was coming, and I asked her if she’d like me to help her sit up a little straighter in the chair because she was slouching and I thought her back would start to ache. She agreed, so I tilted the electric recliner up, the footrest went down, and I positioned myself in front of her and bent down so she could put her arms around my neck. I put my arms around her under her arms, she rocked forward, and I helped her into the standing position. We embraced each other, and I kissed her before dancing her back until the backs of her legs touched the chair and she sat back down. I asked her if she wanted her feet back up and she said yes, so I was beginning to recline the chair when her left leg shot into the air and started shaking.

I looked at it, then at her face, and her eyes were so big. I asked her if she wanted me to support her leg. I had put my right hand under her calf when she said, I can’t stop it and went into what could only be described as a grand mal seizure. Both legs were stiff and shaking, her back was arched, her right hand jerked up to her face but her wrist was bent down, her left arm was thrown out and locked, and her head was turned to the left, facing up, with her jaw clenched and her eyes so wide open, darting all over the place. She was gasping for breath between her clenched teeth and foaming at the left corner of her mouth. I dragged her onto the floor, made sure she was still breathing, then called 911. I was stroking her face and telling her to relax, that help would be here soon. The 911 operator forwarded the call to the emergency medical people, who asked me if I knew CPR. I said I did, but she was breathing on her own and had a heartbeat. I got up, ran to the door and unlocked it, and ran back to her. She was still locked up but not breathing quite as hard. I was stroking her head and cheek when Craig walked in. He looked for the phone, but I had it and was talking with the emergency medical people when the fire truck and ambulance pulled up in front of the house. I hung up and went to the door while Craig stayed with his mom.

She was just starting to relax by the time they were taking her to the ambulance almost fifteen minutes later. I told her I’d see her in just a little while and went back inside and broke down and just sobbed. I wasn’t sure if she was going to make it through that night. Craig was such a comfort. He offered to drive me to St. Francis emergency, but I told him I would drive myself because I was going to stay as long as I had to.

I changed my clothes and got there about five thirty. Craig was already there, and Lou asked if Blake knew about this. Craig said that he’d called Blake so he knew. Both Craig and I were a little surprised that she said that because we didn’t know how aware she was of what had happened. She spent a lot of time in the room with an IV drip and BP/oxygen level/heart-rate monitors hooked up. She had already had blood drawn and sent to the lab by the time I got there, but it wasn’t until about eight thirty or nine o’clock that she was taken for a CT scan or an MRI—I’m not sure which one. Regardless, at about ten thirty, the ER doctor told me she was going to be admitted to the hospital. By eleven thirty she was checked into her room and sedated, and I left about twelve thirty in the morning and was home by about twelve forty-five. I ate something and went to bed. I think I finally fell asleep about three o’clock.

On Friday, October 8, I was up by eight o’clock, showered and shaved, ate breakfast, and called Cheri, Logan, and Edna to let them know. Pastor Sarah wasn’t at the church. I believe she had the weekend off. Cheri and Logan came over to the house for a few minutes, and then I went to Rite Aid to pick up a couple of my prescriptions before getting to the hospital at about eleven forty-five. Craig was there already, and so was Edna, and I got a smile from Lou. Edna left at about twelve thirty, and Dr. Cunningham, Kelly, Janine, and the chaplain, Matt, wanted to meet with me, so they found us an unoccupied room, and we sat down and talked.

Dr. Cunningham told me that the results of the scan showed slight swelling around the large brain tumor, dangerously low potassium and sodium levels, spots in her liver, spots in her lungs where there weren’t any before, and blood clots in her left leg. The doctor felt that it would be possible to treat the clots with anticoagulants, but that would also entail a lot of blood testing to check the Coumadin level, causing a lot of discomfort. Then when the clots were gone, they’d have to treat the cancer in her bones, liver, and lung with chemo to keep it at bay before trying to treat the brain tumors with radiation once again. In the meantime, she was getting potassium, sodium, antiseizure medication, and pain medication via IV drips. He also told me that the antiseizure medication was no guarantee that she wouldn’t have another seizure. Also, if she happened to have another seizure while she was on anticoagulants, there was a good chance that she would bleed around or in her brain. His question to me was, If something catastrophic happened to her, such as a heart attack because of the clots or her heart stopped, would I want them to take extraordinary measures to keep her alive? All I could do was sit there with tears running down my face. I told them no, to let her go. I couldn’t do that to her, to put her through any additional pain without any guarantee that she would live and not be in a vegetative state. I didn’t want her to hurt any more. I also told them I’d have to talk with Craig and Blake. They told me they thought I was making the best possible choice. I told them the choice shouldn’t have to be up to me.

By the time I got out of that meeting, Blake had arrived and was in the room with Craig and Lou, so I pulled the boys out and we went to the lobby to talk. I told them what the doctor had said, and then I told them that we’d all have to make the final decision since she was their mother. I told them what I told the doctor and why, and we all sat and cried; in the end they, too, thought we should let her go.

Craig and Blake stayed until about two thirty and then decided that they’d go home. Blake said he’d be back at the hospital around eleven o’clock that evening, and Craig would be there at about four thirty the next morning, October 9. I stayed until about eight thirty that evening, then had to go home because I was dead tired and needed to take my meds and eat. I also called Lou’s oldest sister, Dar, and broke the news to her. We both cried.

After the call to Dar, I walked around the house, looking at each room in detail. I laughed, then cried at what I saw. Lou and I were so good and so bad together. I saw the clutter of our life together, the clutter of our lives in disarray because of the immediate effects of Lou’s cancer, but also saw the coordination of the room designs, the paint colors, the photos and artwork on the walls, the flooring that pulled it all together. I saw the projects that we’d agreed to do but didn’t because we decided to go to the Puyallup fair or decided to go out and play somewhere and then never got around to doing those projects. But the projects would wait because we were the babies or the two grasshoppers without an industrious ant to keep us on track. I started to have some regrets about that, but then realized that we did the right thing by playing together when we did instead of working. We got to have fun and spend those enjoyable times together, laughing about not getting our projects done. I realized that I would do those projects one day—probably alone—but also with Lou looking over my shoulder and perhaps telling me I did a good job. It was all right. I broke down and sobbed. I’d never felt so overwhelmingly sad. The tears were cleansing, and I finally was able to get some sleep.

I got to the hospital about eleven thirty the next morning, but Craig had left early to get to work. I sat with Lou, and the doctor finally visited around one o’clock and asked if Lou wanted to go home. She smiled. She was ready. I signed the papers at about one thirty, and the ambulance was ready for her. I kissed her good-bye and told her I’d be waiting for her at home. She smiled again.

It took longer for the ambulance to get to our place than I thought, but they showed up at about two thirty and had her in the house by around three. I had her tucked into bed and warmed up, and she was a happy girl. She knew where she was and smiled when I kissed her and told her I was so happy she was home.

She napped on and off for the rest of the day, sometimes awaking to ask where she was. Once, though, she awoke and said, This room needs new paint. I agreed, but told her she’d have to get stronger first before we started our home projects again.

Just before she went to sleep for the night, right after she took her meds, she asked where her purse was. I told her I had put it in the closet and it was safe. She told me she needed it, and when I asked her why, she told me she had to catch the train. I told her that this wasn’t a regular stop for the train and that it wouldn’t be coming tonight, but if it was all right with her, we’d talk about it in the morning. She was quite satisfied with that and fell asleep shortly thereafter. My heart sank because her mother, Grace—Gracie to us—asked for her purse because she was going to catch the train not long before she passed away. Maybe Gracie was waiting for her. My heart ached.

Today, Sunday, was a quiet day. Craig helped me move the recliner from the living room into the guest room beside Lou’s hospital bed, and the nesting tables that were beside the bed are now temporarily in the living room. I put a smaller table from the family room in the guest room beside the hospital bed to put the lamp and a couple of photos on it. The recliner now has just exactly enough room to recline. I still can’t get the TV to work—I guess the IR receiver is too far from the transmitter now that I moved it into the guest room from the living room. What now? I’ve got to find a way to get some TV in that guest room for Lou.

I received an e-mail from a friend and former coworker:

From: M’lynda

To: Bob Ellison

Sent: Monday, October 11, 2010, 9:33 AM

Subject: Re: My Lou

Bob,

I hope this e-mail finds you with Lou at home and that she is comfortable. Mike C. sent an e-mail letting us know of Lou’s seizure. I am so sorry; I know how scary that is. My dad had a few of them. I remember just holding his hand telling him we were there and it’s okay, that it will pass. My heart goes out to all of you. I know how hard this is for Blake and Craig. Watching a parent go through this is heart-wrenching. Those tumors on the brain are just so cruel!

I completely understand when you say it’s difficult to talk on the phone. There is a certain safety in the written word instead of the spoken at this time. We had to ask that my dad’s friends and even mine please contact us through e-mail because you really can only talk when you are able to. There are times when it is the last thing you can do, and there are times when it’s a lifeline to talk to a friend. Watching her like you do and stroking her cheek are the kindest things you can do for her and for yourself. This time you have with her now is so precious. I don’t know what the outcome will be, but if she is being called home, what you are doing for her is helping her make the transition with love. I always wondered if the Lord was listening too … how He could let something like this happen. I still question so much. Hospice is there for you too. It helped me to talk to them at times.

Please know I am here praying for all of you. I pray daily to find a cure to cancer. I pray so much for Lou’s comfort and for you, Bob. I know it doesn’t feel like it, but you are strong. You are so strong for Lou. Please give her a kiss for me.

Much love to all of you,

M’lynda

I replied to her that evening:

M’lynda,

I am home with Lou. I got to bring her home on Saturday, and it was evident that the massive seizure caused some damage. Fortunately, she knew where she was and was so happy to be home. She would sleep for awhile, then wake up, then sleep again. Once, she asked for her purse. When I asked her why, she said she needed to catch the train. I told her that this wasn’t a regular stop for the train, but we’d talk about it in the morning. She was satisfied with that answer and went to sleep happy. Sunday wasn’t too bad, but today was a bit of a different story. She’s declined noticeably since even yesterday.

I’m now just giving her antiseizure medication, steroids to try to minimize the swelling, an antianxiety/antinausea pill, and her OxyContin and oxycodone for pain. We’re down to the very basics now. I’m not sure how much longer she’ll be with us. The boys spend the days here at the house, and we take turns sitting with her. She sleeps most of the time, awaking occasionally for a couple of minutes to stare at us, then at the corner of the room, then closes her eyes and goes back to sleep. She hasn’t tried to talk very much since this morning at 4:30 a.m. when she tried to get out of bed. She wanted hugs and loves and pain medication, so I gave her all she wanted of everything. She may have been trying to say good-bye, but she’s still with me tonight.

I still pray, but I do wonder if He’s listening. I know that since Adam and Eve got tossed from the garden, He gave us free will and has allowed things to happen. I wonder sometimes if He is showing Lou mercy by taking away her short-term memory so she doesn’t realize she’s suffering. I won’t know until I make that journey myself, but this is one of the things I pray for.

I either sit beside the bed or stand in the doorway and watch her sleep when the boys leave for the night. She looks so peaceful, and my heart aches so much because I miss her already. Yes, the time left with her is so very precious. That vital, beautiful, loving mate of mine will always be with me in my heart and memory, but I will miss her very presence. We’ve been together for only 28 years, but it has seemed as though we’ve been with each other forever—and I do mean that in a very good way. She has been my one great love that everyone dreams of. I have been fortunate, yes, and so blessed to have experienced that.

You’re so right about there being a certain safety in the written word instead of the raw sound of the spoken word right now. I can hide the tremor in my voice and let the tears roll down my cheeks as I write, and maybe no one can tell. Hospice has been so great—the nurse and the social worker are incredible people and a comfort to all of us.

Thank you again for your prayers, M’lynda. I, too, pray for a cure for all cancers. I pray for the strength to continue and for Lou’s comfort. I still pray for a miracle cure for Lou, but I don’t think it’s going to happen.

I did give her a kiss for you.

Thank you for sharing your heartache with me.

Love and blessings to you,

Bob

October 13, 2010

Not much happened on Monday, October 11, except that Kelly and Janine visited with us at noon. Craig and Blake were here, too. I told Kelly that I had stopped giving Lou her regular meds, the thyroid medication, potassium because it was too large to swallow, the blood-pressure medication, and all the rest of her health medications and was just giving her the comfort meds—the OxyContin and oxycodone for pain, the steroids to keep the swelling in her brain down, the lorazepam (antinausea/antianxiety), and the Keppra (antiseizure), but I needed to find out if there was a liquid alternative to the Keppra because the 250mg tablet was too big for Lou to swallow. She said that there was and that she’d make sure I got it (levetiracetam) the next day. She would also call Dr. Otero and cancel the appointment that we had set on September 28 when he referred us to St. Francis Hospice Care and said he’d like to keep in touch with Lou and would still be her oncologist.

I was surprised when both Kelly and Janine told me I had my priorities right and they didn’t have to teach me anything. I was only trying to keep Lou comfortable. Also, Kelly told me that the bath lady would call me on Tuesday.

Tuesday morning, October 12, right around eight thirty, I got a call from the massage therapist, asking if she could stop by around ten o’clock to give Lou a massage. I said it was all right with me and gave her directions to get here. At about nine thirty, true to Kelly’s word, FedEx pulled up in front of the house and delivered the Levetiracetam for Lou. Shortly after that, Tena, the bath lady, called and said she’d be here at noon.

Tuesday was a good morning for Lou. She awoke at about eight o’clock, said good morning to me, and took her medication; I sat with her for about half an hour until she fell asleep. She was really with me for almost twenty minutes as I described how beautiful the day began with the sunshine and how it was really starting to feel like fall and that the leaves were turning the most beautiful colors. She smiled at that just before she fell asleep.

Like clockwork, the massage therapist, Beth, showed up and was so gentle with Lou—she loved it and fell asleep before her massage was done. I believe that Craig showed up at around eleven thirty; Tena, the bath lady, showed up at noon and cleaned Lou up as she lay on the bed; and then Blake showed up around twelve thirty or one o’clock. Pastor Sarah also showed up around two o’clock, and we visited until Blake called me into the room and said that Lou had an accident. She had a rather explosive bowel movement and soiled the pad, the floor, the sheets, her gown, and herself quite badly. We had no idea where it all came from because the last time she ate anything was on October 6, when she took two bites of my egg wrap. It took Pastor Sarah, bless her, and me an hour to get Lou and everything cleaned up, the bed remade, and the soiled linens into the wash. Lou, bless her heart, tried so hard to help, but was so weak and exhausted that she could barely move. Once she was cleaned up again and put into a clean, warm bed, she fell asleep.

She slept like a baby after that, being all cleaned up, lying on clean sheets and with her Red Hat blanket over her. It was a soft, purple fleece blanket with large red hats all over it, that was given to her by her secret sister when she joined the Red Hat Club, an informal group of older ladies, generally over sixty years old, who got together for various fun outings and dinners, and raised money for local charities through bake sales and auctions. It was her favorite blanket because it was so soft.

Craig and Blake went out and brought back Cave Man Kitchen barbeque, and I had the chicken. Marty, my friend from the praise-team band, stopped by between six thirty and seven and brought me a teriyaki beef dinner that I will eat later. He stayed for about an hour and talked with the boys and me. It was good to see him.

The boys left around eight o’clock, and Lou slept through until this morning—with one exception. I was sleeping on the recliner when I awoke at 3:10 a.m. and looked at Lou. I saw her looking back at me! I smiled and told her that I loved her, and she smiled back. I held her hand for about five minutes until she fell back asleep.

This morning was amazing! It was such a gift. I got up at about seven fifteen, went to the bathroom, and then got a cup of coffee. I went back to the guest room to peek in on Lou, and I saw that her eyes were open and looking at the doorway. I stepped into the room and said good morning to her. She smiled and said good morning right back to me. I asked her if she’d like the blinds open to see what kind of a day it was, and she nodded. I opened the blinds and commented that it was so foggy I could barely see the house across the cul-de-sac. I tilted the blinds so she could get a look at the trees shrouded in fog, and she said, "It is foggy out there!" I told her that it was so different from yesterday when the sun was out and it was so clear. Then I showed her that I hung her favorite outfit from Chico’s on the closet door so she could see it. I asked if it really was her favorite outfit, and she smiled and nodded.

I asked her if she’d like to take her morning meds, and she nodded yes. I brought them in, showed them to her, and she opened her mouth and let me drop them under her tongue. I gave her some water, and she swallowed them without any protest. I gave her the liquid version of the Keppra, the antiseizure medication, and she made a face. I asked her if it tasted bad, and she nodded. I gave her another sip of water.

I sat in the chair and asked her if Blake had told her about the kids. When she said no, I proceeded to tell her about Evan, Luke, and Jack playing soccer and how well they were all doing. I told her that Craig was still talking about the vacation in Maui when we took all four boys, Cheryl (Craig’s wife), and little seven-month-old Carina for ten days, and how he’ll never forget it. I reminisced about our vacations to Montana, Yellowstone, Arizona, New Mexico, California, and Virginia/Washington DC, and she’d smile and occasionally say something. When she did, I’d smile at her, and she’d smile back.

In the middle of this, I saw her gaze go to the Red Hat fleece blanket that I had removed from her during the night because she was too warm and draped over the back of the recliner. I commented that I noticed that she saw her favorite blanket and asked if it really was her favorite blanket. She gave me a big smile and nodded yes. I asked her if she’d like me to cover her with it, and she smiled again and nodded yes. I gently covered her with it and positioned her right hand so that it was touching the large tied fringe along the edge of the blanket, and I watched as she rubbed the tied fleece fringe between her fingers and smiled. I continued to reminisce until she closed her eyes and went to sleep. She was with me for a little over an hour. I was so grateful that I had to go to the living room and sobbed. I love her so much it hurts.

Craig called before he left for work, and I told him about what had happened and he choked up. He said he’d be at the house as soon as he got off work. Lou’s sister Jan and her husband, Carbery, stopped by to see Lou at about eleven o’clock, and we talked for a little while before Jan went into the guest room to see Lou. Jan quoted her part of the Twenty-third Psalm, talked with her, held her hand, and kissed her before coming out. Carb sat and talked with me. Blake arrived at about noon and talked briefly with Jan and Carb before they left. I asked Jan if she wanted to say good-bye to Lou, and she said she already had. It would be too painful to do it again. Jan was thirteen years old when Lou was born and loved her little sister so much. She was like a second mother to Lou, and they had been so close for so many years.

Edna, one of Lou’s good friends from church, stopped by about one thirty. Edna and I were talking in the living room and I was asking about Bill, Edna’s husband, when Blake came out of the room and said that Mom was having some problems. I left Edna and went to the guest room to check on Lou, and she had soiled herself again. This time, with no Pastor Sarah to help, I cleaned her up by myself. It still took about an hour, but I did get Blake to help position Lou so I could get a fresh sheet under her. She tried to help again, but was too weak and hurt too much to help, but she tried. She’s a real trooper. I finally got the bed made under her and got her covered up and toasty-warm, and she fell asleep, exhausted, for most of the afternoon. Edna left somewhere in the middle of my cleaning Lou up—I don’t think she handles crisis very well. Pastor Sarah came for about forty-five minutes during the afternoon, and before she left, we all went into the guest room and prayed around Lou. She woke up and listened to us pray for her, then Pastor Sarah hugged and kissed her and then left.

I called Kelly and told her about Lou’s diarrhea, and she told me to grind up two Imodium and make a paste of it with ice cream or yogurt and give it to her. If it continued, then I was to give her one more, but no more than eight in a twenty-four-hour period. I made the Imodium paste with yogurt, woke Lou up, told her what it was, and she was willing to take it. I fed it to her with a spoon and she made a face, so I had a sip of water ready for her. She was back asleep within five minutes. Kelly said she would come by in the morning around nine o’clock to bring some large latex gloves for me, as well as more blue pads to put under Lou and some absorbent briefs to put on her to contain her diarrhea.

Lou slept most of the afternoon, waking briefly to talk with Blake and Craig, and then would go back to sleep. When they both left at about seven o’clock, they went to the guest room to say their good-byes for the night, and they both got big hugs from her. I was so glad! They really needed those hugs from their mom. They both left with tears in their eyes.

Debi, Marty’s wife, stopped by at about seven thirty and asked if she could see Lou. I took her into the guest room, and Lou woke up. Debi hugged her, and Lou hugged her back; they talked for a little while before Lou drifted back asleep.

I woke her up at about nine thirty for her meds, and she took them quite well. The liquid substitute for Keppra probably tasted worse than the bottom of a birdcage, so I gave her a sip of water afterward and then swabbed her mouth with cool water and massaged her gums with the sponge swab. She really liked that. Then I kissed her goodnight and sat with her until she fell asleep.

No sooner had I walked to the living room than the phone rang. It was Don calling from Cyprus. He called because he had just gotten up, checked his e-mail, and read my e-mail to him:

My dear Brother and Sister,

Lou had a massive seizure last Thursday afternoon and was hospitalized once again. It took her over 15 minutes to release from it. The scans also showed swelling of the largest brain tumor, tumors in her liver, spots on her lungs now, and numerous blood clots in her left leg. The boys and I had to make the decision to treat all these things or to bring her home, make her as comfortable as possible, and let her go peacefully. I got to bring her home on Saturday, and it was evident that the massive seizure caused some damage. You must know that I’ve condensed all this and that this was the most difficult decision I’ve ever made in my life. It shouldn’t have had to be up to me. I’m devastated by it.

Fortunately, she knew where she was and was so happy to be home. She would sleep for awhile, then wake up, then sleep again. Once, she asked for her purse. When I asked her why, she said she needed to catch the train. I told her that this wasn’t a regular stop for the train, but we’d talk about it in the morning. She was satisfied with that answer and went to sleep happy. Sunday wasn’t too bad, but Monday was a bit of a different story. She’s declined noticeably since even then.

I’m now just giving her antiseizure medication, steroids to try to minimize the swelling, an antianxiety/antinausea pill, and her OxyContin and oxycodone for pain. We’re down to the very basics now. I’m not sure how much longer she’ll be with us. Craig and Blake spend the days here at the house, and we take turns sitting with her. She sleeps most of the time, awaking occasionally for a couple of minutes to stare at us, then at the corner of the room, then closes her eyes and goes back to sleep. She hasn’t tried to talk very much since Monday morning at 4:30 a.m., when she tried to get out of bed. She wanted hugs and loves and pain medication, so I gave her all she wanted of everything. She may have been trying to say good-bye, but she’s still with