A Picnic in the Snow

We spent much of the day in Montana---my first trip there. Lisa and her family were waiting for us at Three-Mile when we arrived. She had a big truck. We followed her for about 35 minutes to a lot she has overlooking the Yaak River. A neighbor, her boyfriend I think, had built a nice fire down on the lot. Lisa and her sister had made a lot of food for us to cook hot dogs and eat lunch. But Lisa had forgotten the hot dogs, not anything else. She was mortified, but we were fine. In fact, you had made yourself a roast beef sandwich just as we were leaving. You had it in your pocket. Lisa is good company. If you had made one friend while working at the law office, Lisa was a good one. There are no coincidences for Christians, yet I have tried to pass our meeting Lisa off as one. It isn't but I don't yet know why, and maybe I never will. We hope she can come to the sledding and fireworks at Luci and Lee's tomorrow. It would help her to get to know some of the people around here. We would like to see her again, too.

Mike and Joy made dinner. Spaghetti again but with a beautiful salad and delicious garlic bread. You and I had bought more things at Three-Mile on our way home. Mark prayed out the old year and I cried because much of the prayer was for you, and I didn't know if it was making you angry. Mark thanked God for the challenges this year has brought and asked Him to keep you healthy through this coming year. I touched me deeply that he would make this our family's prayer for the last evening of the year. Somehow that prayer has stayed in my mind this evening. God has given us this challenge, this burden to bear, this difficult test. I believe He has made me strong enough for it but I am terribly disappointed in the struggles I have with helping you in the area of faith. I spoke to you at length about the Rob Bell book and you were intrigued. You started to read it but of course you stopped. I want to push you on. I think it is a book that can take you to a place of faith that you'd find palatable.

It is almost midnight and you are just waking from a couple hours of sleep. You usually sleep through NewYear's. Maybe you'll be awake this time. And maybe God will keep you healthy for 2010 so it won't be our last.

A Full-time Job Plus Overtime

Today I wanted to stay in my pajamas, well actually Beth's pajamas, all day. I didn't sleep enough last night and maybe I had just a tad too many wine coolers. As our family numbers have grown, the bedtime has gotten later and later. Since the stovepipe travels through our room with lots of 'extra space' around it on its way to the roof, we get lots of 'extra noise' with the heat. The fam was up until at least midnight. I had a bit of reflux and had trouble slowing myself down and into sleep. Although the sun was still obscured by clouds, the light woke me up right after sunrise. Well, the light and bad dreams. I dreamt that the couple who had visited us from church were not in love, were separating, she had a restraining order on him, and he was stalking her. Was that really a dream about my first marriage? The people at church had no idea that marriage was falling apart either.

My sisters were up and cooking breakfast. You had gotten up early, as usual. I felt you leave bed at about 6 a..m. I spent a lot of time reading my book today. I like it. I like it so much I don't know how to explain it to anyone, afraid that my words would simplify the enormity of its message, would distill it down to something simple and therefore misrepresent its message. I worry I won't be able to communicate the major, phenomenal points the author makes. So I say nothing instead. I would rather not share it than risk sharing it incorrectly. This has been my way on more than one occasion. I don't think it's good. I would like to practice articulating how I feel about this book. I think I will ask Trevor if he has a study group going on this book. I really, really want to discuss it with someone. And at best, I could share my favorites parts---but then I'd have to read it again to mark them. But I might end up marking most of the book.

After you took a nap we went to the little bakery about twenty minutes away, still out in the middle of nowhere. We shared a huge sandwich with meat, cheese, lettuce and tomato on homemade bread. As we were finishing you said, "I know that woman." A woman was about to come through the door but I didn't know her. I said, "I don't know her." She walked in and said, "Bill!" She had been the secretary at the law office where you used to work. She moved up to this area last year, left her husband, took the two kids. Weird in this boonie place. But nice. She invited us to meet with her tomorrow and drive up to a lot she has in Montana. I think we'll go. I hope the weather is okay.

Your rash is a little better and you are not suffering quite so much from diarrhea. And you haven't done as much sleeping today. As we rested you said another cancer patient had said, "Dealing with cancer is a fulltime job plus overtime". I said I was glad you are in a position where you can do that. I don't know how my principal or assistant superintendent took care of themselves and worked too. You have made new appointments with doctors, have been researching the chemo drugs you have been taking, talking to the people at the Pancreatic Cancer Action Network, and looking at cancer and pharmaceutical websites. You are looking at building a list of criteria for whomever you will have as a new oncologist-----that is, if you decide to change oncologists. And I think you will.

Snow on the Ground

We woke to snow this morning! Not a huge snowfall but enough to give us two or three inches on the ground. It blocked the sun rising on my side of the bed thus allowing me to sleep until 8:00. It was so beautiful to watch.

Mark took 8 people up to the mountains with the quads. They were gone for several hours. I wondered how they were feeling. I have such a dislike for being cold. You and I tried to take a half-hour walk but five minutes into it you slipped and hurt your arm. We went right back to the house. From now on we'll try indoor activities. There was something about that fall that really frightened you. Was it your health or your memories of the searches you went on where veteran hikers had slipped on ice chutes, disappeared and were found dead several days later? There seemed to be a huge number of those your first years of search and rescue. You mentioned it several times today.

We had some women from church over for a spa afternoon. We had a nice time and one family stayed on through the evening for dinner and game night. Mike sang his songs: "Ginger and Buddy: the Mini-Wiener Dogs", "No Testosterone", "18 Frickin' Holes" (his golf song) and "My Joy", his song for his wife. He is good. I hope you enjoyed it.

You were uncomfortable today. You had a lot of fatigue and diarrhea again. You thought it was from the ham sandwich I made you for lunch. Your chemo gas is bad enough. You and I lie in bed with the can of room freshener and laugh, but I feel sorry for you when you get diarrhea. It weakens you and tires you out.

You went to bed before we started our game night. You don't usually play our games anyway so I'm not surprised when you disappear but I have always wanted you to join in and have some fun. Maybe it's not who you are or ever will be. We played Beyond Balderdash in pairs this evening. I was paired with Scott, and we did miserably. We didn't even spell LSD correctly. Seriously. Where are our brains? But we now know what a tulchin, a scopula and a butwink are.

Scotty has an iPod with a very long playlist. I don't know if the sound wakes you up or keeps you from sleeping. People are singing along tonight. You seem to be asleep.

Monday the 28th

It can be pretty quiet here in the mornings. Many of the fam like to sleep in, even some of the kids. You have been able to meditate. It means a lot to you but I have never understood it. I tried it years ago, before we got married and didn't take to it at all. It's your evening meditation that is fraught with interruptions and noise. I told you it would be better if you meditated in our bedroom.

I stayed in my pajamas so long today, it almost wasn't worth it to put clothes on . Getting on the LifeCycle kicked me into gear. I rode for over 30 minutes. I tried not to put any stress on my knees so I used the lowest training level. You didn't exercise today. Yesterday you did the stairs six times and then you and I took a half-hour walk. You were paying for it today.

Mike, Joy and Scott arrived late, about 7 p.m. Sue and I had made stew for dinner, and she had baked beer bread. They brought supplies we had called and asked them to pick up in Sandpoint. They were in a great mood. Scott had his iPod and played it until late in the night. They were up until about midnight. Sue's kids love to play with and tease Scott, and he has a good sense of humor about it. You and my brother had a long talk since you have both had serious abdominal surgeries. You told him you were concerned about quality of life with chemo. The intermittent diarrhea and pimply rash and the fatigue aren't making you very happy.

Today you made an appointment with a doctor/nutritionist at UCLA for the middle of January. You won't be going to Susan anymore. You might shift to UCLA or some other center for your treatment once you get on Medicare in March.

Something started falling from the sky but was liquid by the time it hit the ground. We haven't had any snow yet but the weather had said it would start on Wednesday. We saw clouds move in late today and hope to see snow very soon.

Laura's Twentieth

We had a good night's sleep and Beth had found one of those sleep masks for you like they give in first class on the airlines. The sun comes up right outside our bedroom window. It's a beautiful sight if you've had enough sleep. I know I can put the second pillow over my head and continue sleeping if I'm still tired. I just keep hoping I won't want to. Our room is above the kitchen and two things happen: 1) the heat from the stove keeps us warm and 2) we can hear people when they're in there. The voices are happy sounds for me; I love being with these people, my sisters, my brother and their families. This house often reminds me of the beginning of the first two 'Home Alone' movies when the families are coming together, calling to one another over all kinds of racket, kids running all over the house, and things are happy and chaotic. It's a rare and joyous time for me.

On Sunday morning we went to church. Sue, Dan, Chris and the kids arrived shortly before we left. They had driven over twenty hours straight through from Rohnert Park. Chris and Dan were exhausted and went to bed almost immediately. You and they stayed home from church. Beth, Mark and I went the seven miles in his truck. The services are a little long but engaging, and the social hour is always full of homemade cookies and treats. It's a rare happening nowadays; my church fuels its coffee hour at Costco. People are friendly and speak their minds. Many of them watch Fox News and dislike California. I find it interesting to see how attitudes vary from place to place. I found myself gently telling the pastor that I love where I live, the weather is always perfect, and I think it's beautiful. He kept talking about blistering heat, Death Valley, and how he couldn't wait to get out of California when he had been there.These folks are very literal about the Bible, and I wonder what they'd think about people like Rob Bell and Donald Miller, two of my favorite Christian thinkers and questioners. Would they be open to the questioning? Would they be uncomfortable? Would they consider the questioning heretic?

After sleeping while we were at church, you were up for most of the afternoon and evening. We went for a walk right about sunset:4:15. The days are short here. The sun rises at 7:30 and sets at 4:00. If you stay in pajamas too long, you don't need to bother taking them off. Beth made spaghetti for dinner. It was much like Mom used to make. You never knew my mom, and until recently, that hasn't mattered too much. But your judgments of what happened in my parents' marriage can't exist in the vacuum you've created. There is a complex story there. All marriages are complex; ours should make that clear to you. Both my parents contributed to its demise. And her spaghetti was very good.

Laura turned twenty today. It felt empty not to be with her but this was the price we had to pay in order to come up here this year. Laura only had Friday, Sunday and Monday off from school. She's already missed too many days and will have to stay extra weeks at the end of her program in order to get in the requisite hours to graduate. Since your cell phone is the only one that works up here, you called her and asked her to call you at 6:30 p.m. When she called, we ALL sang 'Happy Birthday' to her. She and Kyle were on their way to drive the go-carts in Azusa again, and then they were going to spend the night at our house. She was thrilled with our singing; it really surprised her to hear our voices together, all thirteen of us.

Dad is supposed to come home tomorrow or the next day. Carmi had called as we were leaving for church to tell us the physical therapist had done the home visit and said everything was okay for Dad to return. Carmi now has a week to get Dad trained on keeping the door and his mouth closed.

Mike, Joy and Scott left Sonoma this morning and should be up here for Monday evening.

Spokane

We arrived in Spokane a little after 9 p.m. It was complicated getting our rental car. You hadn't read the fine print that said we would get an Impala----or comparable model. When the agent sent us out to the lot to find space M-35, we had quite a hike. M-35 was hard to find, and when we got there, it was a Kia Rondo. A what? Was it a full-size, an SUV, or what? We went back inside. She didn't have an Impala; I had already figured that out. But we weren't comfortable with the Rondo. So she offered us a Prius (or a Ford F-150 pickup). We went with the Prius. I had forgotten about frozen windshields. You were waiting for me up by the terminal, and I was scraping, scraping, and making no progress. I had managed to get the car started------as if that was going to be the biggest problem. The agent came out in her fluffy coat and offered to help. She taught me how to use a scraper and got me a better one from another car. I had the heater blowing full-blast, the ice was melting very, very slowly. You were calling on your cell. "Where are you?"

The hotel, for $70 a night, was fifteen minutes away. I wondered what it was we were going to get for that price. It was really nice! Our room had internet, TV, a refrigerator, a microwave, and the biggest king-size bed ever, There was a pool, a jacuzzi, a gym and a beautiful complimentary breakfast in the morning. I would like to stay there again, and remember to bring my bathing suit.

The next morning you were tired. After breakfast you went to sleep for two hours. I did the usual: called the front desk and asked to check out later. After a good workout on the elliptical trainer and recumbent bike, I woke you up right before noon so we could get to Beth and Mark's before dark. I knew we'd want to make a couple of stops on the way and we had to be prepared for anything that might happen on the road.

We got 47 miles per gallon in the Prius, stopped at Walmart, a liquor store, and Safeway, and make it to Porthill with twenty minutes of sunlight left.

You stayed up from noon until 9:30. Everyone remarked at how good you look. You are comfortable, you can eat whatever you want, your rash is starting to diminish, and you are getting plenty of rest. You are getting better and better. I continue to feel you will have more than a year left now.

Boundary County

We left on Christmas Day. What a great day to travel! There was a long line at security at LAX but otherwise the airport was quiet and our plane left on time. It was another picture-perfect day in LA, the kind that makes you question why you're leaving town, and as the plane took off, we flew over our favorite place, the bike path on the beach. I looked longingly at it, wishing we could have had enough time in the day to have taken a ride before heading off to the airport. But I was grateful to have been able to see Dad and have a moment with Laura and Kyle at the house before the cab came to fetch us.

Our first stop was Salt Lake City. It seemed out-of-the way for a trip to Spokane. Our lay-over wasn't long and we took one of those little shuttles to our gate. I was glad we did because when we got there, the airline had given us the wrong gate information for our connection, and the shuttle driver had to take us most of the way back to get to our real gate. Those folks in Salt Lake were very serious about leaving on time. And, to be quite honest, I made a complete idiot of myself.

Since you are immuno-suppressed, I take sanitizing wipes and wipe down all of our seats, armrests, buttons and tray tables before you sit down. This time I went ahead of you to do that deed before you got on the plane. When I was finished, I sat down and waited for you to board. It made sense to me that you didn't want to have to wait in a line to get to your seat. But suddenly there were no more people boarding the plane and you were nowhere in sight. The flight attendants were starting to make announcements, everyone was seated, and you were not on yet. I jumped out of my seat. I tried calling you on my cell phone but my hands were clumsily missing ever third button. I had quickly moved into panic mode. I headed up the aisle, excusing myself, darting around people, zipping up to the front of the plane. dialing, misdialing, my hands now visibly shaking. Had you changed your mind? Were you sitting out at the gate lost in thought----or thinking that you still had plenty of time? I dialed and dialed; it was like a bad dream. Finally I was at the front of the plane. I scurried up to the head flight attendant. Breathless, I said, "My husband is supposed to be on the plane. He's at the gate. We can't leave without him. I have to go find him." She looked at me and said, "We still have fifteen minutes." And then, just then, you came strolling down the jetway. "Is that yours?" she asked.

The Night Before Christmas

Christmas as it has always been is not happening. You barbecued steak and we ate off the Christmas Tartan, my favorite dinnerware, just the two of us. Kyle had said he and Laura were coming out this evening but when I asked Laura, they had changed their minds.

This morning we went on a bike ride. It was perfect outside and we both had a nice time.

I met with June and Dolores. We exchanged gifts and June had culled through her clothes again. She brought me two beautiful jackets, one of which was 100% leather, and two pairs of designer shoes. I call this 'Shopping in June's Closet'; it's one of my favorite places to get clothes! I had bought travel mugs with inserts. I photocopied three shots of us singing, typed up names, and inserted them into the mugs. They turned out quite well. I have missed singing with them, and they said three other women from the choir tried doing a trio number in church on Sunday. We will need to get back to our rehearsals soon, and I think I might be able to do it after the first of the year.

You had your third chemo treatment today. They were waaaayyy behind schedule in chemo but the folks down at the flu shot clinic had already closed up and gone home. That left you getting chemo, and me missing the seasonal flu vaccine. I will try to get my vaccine after we get back from Idaho. While you were getting chemo, one of the oncologists got a prescription for a cream for your rash. You didn't get a steroid so maybe you won't be amped tonight, you might sleep well, and you will be sort of rested before we head to Idaho tomorrow.

Dad was okay but had taken it upon himself to 'meet with the business manager' at the health care center to talk about going home tomorrow. Oh, no!! They didn't believe him, did they? I went and spoke to the charge nurse. She said she has no discharge orders for Dad. Anyway, I was reminded that they have to do a home visit before he can be released, and no one is available to do that until after the 28th. It worries me when Dad puts on his 'logical, doctor's voice' and tries to do business. I told the charge nurse to deal with Carmi, that she is completely reliable.

December 23rd

Yesterday I woke at 8:33 with a start. I'm not used to sleeping in, getting up without an alarm clock, or letting by body finish getting the rest it needs. Ten seconds later my cell phone chirped, announcing a text message. Caro was picking me up at 9:00 because I was taking her to breakfast. I had to hurry and my hair was dirty. In the work with our neighbors, and the shock of their news, I had forgotten to tell you about my breakfast date, and you were unhappy, I could tell. You made your own breakfast and ate while I scurried around trying to get myself ready. But people like Caro keep me refreshed and keep my head in the right place; I need these friendships and the nurturing they give.

As usual, you napped a lot but you had a bit more energy today. We were able to resume intimacy, something I had sorely missed over the last two months. You felt good about it too. It represents another step toward normalcy. Which also reminds me... last month I told you I wanted more PDA. On Sunday you put your arm around me in the mall. Later, when Laura and I were alone, she commented on how sweet it was to see you do that. Sooooooo...keep it up!

I finished working in my classroom and got everything ready for a substitute next Monday. Then I visited Dad again. It still worries him that you don't seem to want to have anything to do with him. I see the pain in his eyes sometimes, and I find it hard to address. Today I said you were consumed with your issues of life and death. Other days I have pointed out the differences in your interpersonal styles, your need to be left alone and how it differs from his need to be liked by everyone. He will come home and Carmi will help him practice leaving the door closed. I will continue to pray the arrangement works out. I will ask others to pray for it too. I am tired of driving to the health care center, I am tired of the dearth of parking spaces around there, I am tired of parking meters, I am tired of the cramped quarters in Dad's shared space. When I go back to work, I will be glad to have him at home. And he may never understand why you don't want to see him; you two are hard-wired so unlike one another. He will have to accept it but I would like you to relax about him. He's 89 and his brain isn't working like it used to; you can't take him at face value, and sometimes he doesn't make sense. Sometimes he loses track of the conversation. Sometimes he just doesn't catch on.

It was our evening for cancer support groups. They were glad to see me again and again expressed their regret that I had to be in a cancer support group. "Good to see you. Sorry you're here." There I see how unpleasant our future can get. They are all ahead of me in this process. There I can talk about death and body functions. Poop is a common subject. They give me tips. Last night, as we discussed the coming year, the topic of hope and hopelessness arose. It is hard to be hopeful when cancer dominates your relationship. "We have cancer," is a saying. And when the cancer is gone, usually so is the "we". Right, "I" don't have cancer but "we" do, and when you pass there won't be a "we" anymore. The leader asked us if we were hopeful; I said I was very, very hopeful. But, then again, I'm new at this. You're not in pain and life hasn't gotten ugly.

December 21 and 22nd

Other people are wrapping up their holiday shopping, and I am relieved at not having to be part of it. We have completely forgotten about Christmas. Dad has been very accepting of our decision to pass on Christmas, but since we won't be leaving until after noon on Friday, I will have a chance to visit Dad for a while before we go to the airport. We do, however, have reason to celebrate. Before you started chemo, they ran another CT scan on you. When the doctor gave you the results, your tumor had not grown in two months. This was amazing news. Pancreatic tumors are known to double in size every three months, and here your tumor hadn't made measurable growth, even without chemotherapy. Now that you are getting chemo, we are hopeful it will either shrink or not grow any more. Can you imagine? I am having visions of you being the first person in history whose pancreatic cancer disappeared. They're just a fantasy.

Yesterday morning I told you I was disappointed not to have made the list of things that make you happy. You said you had been thinking of it during the night and had realized you had left me out, one of the main things that made you happy. So you did what I do: you omitted the obvious.

Today you had a nurse remove that last staple from your jejunal bypass. We had worried it would involve minor surgery but the nurse was able to do it, and now we won't have to worry about complications or infections while we're out of town.

Beth and Mark are already in Idaho. We are finally getting our reservations settled. This trip is something I need.

We had a big disappointment this evening. Our neighbor, who married a really nice woman in June, a woman who was friendly and sociable----unlike the former one----has decided the marriage is a mistake. They came over for dessert. She told me when she stayed later to help me fill out forms for your medical reimbursement. When I told you, you were really sad. We are going to have to find a way to still be friendly and accepting of him after she moves out.

Saturday/Sunday Early Non-Christmas

Laura and Kyle (Yes, that's his name. I am finally writing it.) spent the weekend with us. She colored my hair and cut yours. It was nice to have them here, and we had them sleep in Dad's room. He will be home on the 28th or 29th now. It isn't set yet; they have to do a home visit to make sure that the environment is safe for him.

We had breakfast together both days. The weekend flew. I had gotten my H1N1 flu vaccine on Friday afternoon, and I felt coldy on Saturday and fluish today. Today I felt particularly bad in the afternoon but that may have been because I rode my bike too long this morning. It exhausted me and made my muscles ache. By the time we were having our little gift exchange, I was very tired and achy. Laura and Kyle gave me an iPod Nano so I will have something to listen to (besides the music in my head) when I go riding alone.

We went to the mall to return gifts that didn't fit you and had dinner at the food court. It was good; we had sushi, Kyle had Mongolian BBQ, and Laura had a great focaccia sandwich.

On Saturday morning I met with our tax preparer. I wanted to know if there is anything I need to prepare in case you aren't here in April this year, next year, or the year after when I have to file taxes. He said to go over the trust and check beneficiaries. We don't need to declare any of the monies we get from the cancer and dread disease policy, and that could be substantial.

It seems that your pimply rash is from the Tarceva, the daily chemo you take in pill form. It is causing three things: diarrhea, fatigue and this rash. It isn't too difficult for you yet but we will see how the long-term effects work on you.

Laura asked you what you did to relax. She asked if you had ever tried yoga. You said yes. She asked you if you had enjoyed it. You didn't quite answer that one. You started talking about activities at the Wellness Community, meditation and guided imagery. She asked what made you happy. You said the dogs, comedy shows and movies. Apparently, I didn't make the list. Are you taking me for granted? Or are you like I am, and forget to mention the obvious?

And Winter Break Begins

A big breakfast, a pizza party for lunch and gifts. By the time dismissal arrived, I was more than ready to get on with the vacation. I am beat, and tonight Laura is arriving. Quincy is in the house for the week while we have his foot bandaged for an infected paw pad. Our gracious neighbor, the vet tech who knows as much as the vet, came by with antibiotics and wrapping tape. Laura's itty bitty pups will have to stay in their crate the entire time they are here. And that is fine with me. They empty their bladders and bowels on our carpets and hardwood floors. Every time they arrive, they tell us the dogs are now housebroken, and every time the dogs void themselves on our floors. But we are excited to see Laura. It will be fun to have a weekend in the house with her without Dad. We'll have a little non-Christmas together, just a few gifts, maybe some interesting meals.

Generous friends have extended so many kindnesses to me through actions, phone calls and notes. Yesterday a teacher copied all of your medical records for the cancer reimbursement policy. She also offered to run errands if I should need---just call her from Idaho. Another friend asked me to call her to go bike riding. It isn't the time of year; it's the people in our lives. People for whom I will be forever grateful. We are blessed.

A week from today we will go to Idaho. We have booked the flights but not the car rental or the hotel. I think it will all come together. But you never know. Two years ago the weather was freaky and the airport was closed for much of the time we were there.

Carmi came over and we talked about when we thought Dad should come home. We finally decided the PT would come to a home check on the 27th and then Dad could come back on the 28th. That will give him a week to get acclimated to keeping the door closed and keeping his nose out of here before we get back on the 4th. I still don't have a sub for that first day back but I know it will work out. But it is now vacation, and I am looking forward to the time at home.

In A Blur

There are three weeks every year that go by in a blur: the week school starts, the week school ends, and the week before we break for Christmas. Will I get all my cute projects done? Will I get enough money from the parents for the pizza party? Will I remember to get little gifts for everyone and not leave anyone slighted? And what about January? Now I have to get everything ready for January!

This year I just skipped the staff party. But then, this year we're not even celebrating Christmas. Everything is staying in the attic. No tree, no lights, none of my holiday sweaters. We're skipping Christmas because you have never liked it and maybe it's your last one. We're doing it just the way you want it. You dislike it so much, I've coined a new name for you: Scrinch.

Tuesday our neighbors came for dinner because she was going to help me do the paperwork for the cancer policy I have for us. We will get a good amount of money back from them. It will pay for our adventures. It is a very thin silver lining to this cancer cloud. We had a great time. Jim just married her after losing his live-in to a sudden heart attack six weeks after you had your triple bypass. This new wife is a friendly, joyous breath of fresh air, and she has a good heart. We had a delightful time together and barely got started on the paperwork. I hope you see how much these times liven you up. Maybe you'll want to do it more often.

Wednesday was my first time in a cancer support group. It was nice, different, much like other groups I've been in, like twelve-steps. You're glad to find a group of people with the same experience but you're all sorry you have to be there together. They foretell my future. I wondered what I'd be like when I'm an 'old timer'. How long will my 'old-timer' days last? I have to be accountable to them; it's why I had my interview on Monday. I have to let them know when I won't be at the weekly meeting. I had kind of wanted the anonymity of a drop-in group but you wanted to go on Wednesdays. But somehow it made us feel we could make our reservations to fly to Spokane on Christmas. We did it. We took the plunge. Now we're committed.

Today you had chemo again. You were fine. You drove yourself, you came home, you wanted to go for a bike ride (but we didn't), then you rested. But now you have a rash, a big pimply rash growing up your chest and on your neck. The steroid messed with your energy and you feel skittish, unable to focus, and you took an Ambien and are trying to sleep in the middle bedroom. A rash? What is it? Is it from chemo? Is it an interaction? Are you allergic? Will it lead to something more serious?

Monday the 14th

If I were to go to the Wellness Community for an interview to be in a support group (Yes, my husband has pancreatic cancer. Yes, it sucks. Yes, I have to deal with him and my dad. Yes, I am caught in the middle. Yes, I worry that it won't work out with my dad and I'll be running around seeing him, working and trying to help my husband----that is my current and worst scenario. Yes, my husband will use his cancer to drive his agenda hard and get whatever he wants. What I want to know is: what is it that I don't know that I need to know? How wretched is my life going to get if I think running around and tending to my sick 'boys' is my worst nightmare?), why would I feel more stressed and confused when I was finished?

My aunt says it's okay if I start overeating to reduce my stress. She says I can always lose the weight.

You are still sleeping and resting a lot. You wanted to go walking at the mall and return some clothes. Then it got late. I tried eating some king crab legs while you 'rested' some more. What a mess. Crab and shell pieces were flying everywhere. Thank God no one was there to see me (except God, of course) with all that stuff sprinkled across the table and in a circle around me on the floor. Geez! I'm not eating that again. I broke two crab zippers and am amazed I didn't puncture myself.

I hesitated to tell the interviewer I am already worrying about loneliness and the wisdom of retiring this year. When I did, she said I didn't have to think about either of those today.

The Weekend

I got up at 5:30 on Saturday morning. Sometimes your moving around at odd hours can wake me. I stayed in bed for almost an hour and then got myself going. I made us breakfast and then left to go see Laura in the desert. She washed, trimmed and blew out my hair. The weather was treacherous. I fought rainstorms all the way out. Sometimes the rain was so heavy it was hard to see the lines for the lanes, and I felt the car hydroplane a couple of times. The desert was cloudy but not rainy.

Our girl has a talent with hair! She is doing so well in her program and others look to her to see how to do things---and her classmates ask her to do their hair. She still has six months left and it will be a great opportunity for her to get up her speed on everything. She and I had quality time together. She broached some tender subjects, not just your cancer. I truly felt her happiness to see me. She wonders whether or not she has your disease and told me she has decided to be tested for it. She would rather know and start taking medications than not know and deal with the consequences. She also has a little tremor in her hands; she's always had it. I think it comes from not drinking water which she really dislikes. but she also wants to figure out what that is.

My trip home got off to a difficult start. It was raining about thirty minutes out of Palm Desert in the dark when I realized tule fog was starting to develop along the desert floor. That's very scary stuff and I considered turning around and going back to Laura's. But I gave it a few more minutes and there was no more.

You didn't come out with me, even though I invited you twice. Once I returned and told you about my day, you regretted not having gone with me.

Today we went for sushi at our favorite place downtown. They don't make it fancy but the servings are generous and the fish is always the highest quality. I don't think you're going to follow the doctor's orders not to have sushi during chemo; I hope it doesn't cause a problem. They still make a spicy yellowtail roll that puts me in heaven.

You have spent most of the weekend sleeping. I don't know what this means. We took a little walk this morning, about 25 minutes, and you are still having trouble getting your strength back in your legs. Muscle atrophy? I don't know.

Today I had my first tough spell. I fear these times. I fear my feelings of loneliness. I fear my need to have a companion. I fear the emptiness I used to feel when I was younger and didn't have a boyfriend will return when you're gone. They existed so long ago in a person I hope is no longer me. I fear them because they were always coupled with feelings of worthlessness. Am I different enough now to intellectualize those feelings away? Will I feel loneliness without worthlessness? What is loneliness like by itself?

At Long Last Friday

You were leaving to go to the grocery when I got up at 6:45. You had had a little trouble sleeping during the night. Then I remembered they had given you an anti-nausea steroid drug right before they started the chemo yesterday. Our neighbor had said she had been on steroids, too, when she was getting chemo for breast cancer, and that she had been amped. At 11:00 p.m. she'd be up cleaning out her attic. She got so much done that she didn't have anything to do for a month before Christmas. You have a weird cycadian rhythm as it is, I don't think you need steroids to start making it any weirder.

Today I dragged myself through the paces. It was raining and it was one of my students' birthday. He and his mom brought in little kits for everyone to make a gingerbread craft house. Fortunately it was foam and not real gingerbread. The children had a great time and I think everyone felt successful. They announced we would not have rainy day schedule for lunch. You can sure tell when the administrators are off-campus! No sooner did I start walking my class to lunch than it started to rain. Great! Fifteen minutes for lunch.

I visited Dad. I came home at 5:00. You were gone. You sent a text saying you were at Fry's and would be home in an hour. I think you have forgotten it's Friday, it's rush hour, it's raining, and you are in Los Angeles. I don't expect to see your little face for quite some time. I said I am so tired I could get in bed now. You said the same. We've done that a lot. We'll probably do it a lot more.

First Day on the Stuff

I woke at 5:00 with chemo nightmares. I don't remember the specifics; I just remember having dark scary dreams about IV's filled with toxic liquids. These nightmares, do they foretell our days ahead? Will your life begin to mimic my dreams? How weak, tired and ill will you get?

I arranged for a friend to watch my class so I could leave work 15 minutes early. It was tricky but we managed. How ironic it is that whenever I go hauling out of work at breakneck speed, we end up having to wait an hour. They didn't start hooking you up until 3:00 and then they had to order the bag of Gemstar from the pharmacy. I suppose they save a lot of money that way. Imagine them having all those solutions ready and patients not showing up. I think there's some FDA regulation that says they have to throw it away. When it arrived, the nurse, who was wonderfully kind and informative, told you it might cause a burning sensation as it went in. If so, and if it was really painful, you were to tell her. Ah, but not you. You have a high tolerance to pain. You never get motion sickness. You take DayQuil to go to sleep. You rarely run a fever. Your system is weird. You said it tickled. OK. Works for me not to see you in pain.

But the nurse gave a long talk about nausea, pill-taking, the other chemo drug you take daily in tablet form, preventive nausea meds, and fatigue. If we go to Idaho, you will be fatigued, really fatigued. Tres, tres fatigue. The only complaint she consistently hears is that patients are so tired. She said not to push yourself. Take the plane ride and go to a hotel. We will take the trip in two days. But I still haven't made the reservations. What's my reservation?

We stopped for tacos on the way home. You were working me for sushi but the nurse said no raw meat, fish or eggs while you're on chemotherapy. You will be taking three weeks on chemo and one week off for sixteen weeks. I shall be sushi-ing with my girlfriends for the next four months. Sad for you. I drove right past Miyako.

I went to see Dad at the health care center. It tires me out to run around like that. Carmi came by early this morning and we told you how she and I are prepping Dad to keep the door closed and keep his nose out of your business.

Three Days Gone By

This week has flown by. The time it takes to work, visit Dad, take care of other little errands and whatnot, eat up my days. Here it is 9:00 p.m., and I am slowing down for the evening. My days have started with early meetings as well. Yesterday I took off to go to the oncologist with you but went into work at 7:30 a.m. to meet with a tech person to set up my class webpage. I wanted to get it done then and there but that isn't quite the way my tech friend wanted to do it. He doesn't understand how a little glitch in remembering directions can totally unglue me. My webpage will go up but it will be perfunctorily done, at least for the time being. Human Resources called while I was there and screwed up my sub. They sent someone who hates kindergarten and hasn't really had a good time subbing for me in the past. I knew there was a reason I shouldn't go in when I've called for a sub.

Ah, the oncologist! The much-awaited appointment came, and we were there with our typed-up questions and tape recorder. We were introduced to the term 'standard of care'. Hmmmm, it's the one thing that stuck in my mind and made me just the tiniest bit uncomfortable. When the doctor said she used the 'standard of care', did she mean that was a bare minimum? Did she mean she wouldn't try anything edgy? Did she mean she wouldn't knock herself out to help you? She did spend a lot of time with us. She did sound as if she really cared. She did sound like she likes her work and is committed to it. But, like all others except the folks at the Wellness Community, she did sound like you are going to die soon, you have a death sentence, and she will use the 'standard of care' to slow it down. Gemcitibine is to be combined with Tarceva. I'm sure I will learn a lot more about these as time goes by. The treatment is not so much about the tumor size but how it affects the patient's functioning. She has had patients live outside the norms but not really any who have lived more than five years. It doesn't mean you won't be one. For practical purposes, you are about a stage 3 or 4, mostly because your tumor is inoperable. She worries about you getting blood clots and she wants you to keep your legs moving a lot. Blood clots! What does that mean? You will do three weeks on and one week off, going on Thursdays for a half-hour treatment. You will take Tarceva in pill form every day. It has a cumulative effect. You should be feeling quite the impact by the time Christmas comes.

We had a meeting with the head chemo nurse. She didn't want to be recorded. She told us what to expect and gave us a tour of the chemo room. I looked at the people in it. Did they look sick? Did they look thin and gaunt? Did they have circles under their eyes? Did they look nauseous, deathly-ill? No, they all looked very healthy and well-fed. Maybe you won't vomit; the doctor and nurse said it isn't a common side effect of this chemo. The only things they stressed were the fatigue and low white-cell count. As we spoke with them, I started doubting that we'd be able to go to Idaho. We would be too far from medical care, your white cell count will be low, we're supposed to avoid crowds and airplanes are notorious germ pools. I think there's going to be another holiday screwed up.

When we got home, you started feeling coldy. Wait! How could you get a cold? I've been well for two weeks! Who did you run into? Where did you go? You had a CT scan today, Wednesday, and you will go in for your first chemo treatment tomorrow at 2:00, even with your cold. I will leave work early to go with you. I don't know how this will impact your body within the next few days. I am nervous. Will this be the beginning of a really bad time for us?

Dad is in the Health Care Center. He moved rooms so now he isn't with a crazy former army colonel who yells that his wife needs a wheelchair. He is sharing a room with the president of the residents. He must be likeable. At least I hope he is. Dad really wants to come home. I keep prepping him that he needs to keep the door closed and leave you alone. He has always thought that if he didn't like someone, or they didn't like him, he could just be nice to them and 'kill them with kindness'. He doesn't get you. You want and need to be left alone, especially now. You don't need 'How are you?' 'What are your plans?' etc. It serves as a further annoyance to you. This makes me so nervous, and I find myself worrying about it a lot. You are using your cancer as the trump card for Dad. If he bugs you, I will have to find him a place to say, you say. That's funny because I remember telling you that the only thing that would push me over the edge would be if I had to run here and there to visit you and Dad. This is still eating at me. The one thing I told you would mess me up, and you are pushing for it.

Sunday, December 6

I almost got you on the bicycle today. Actually, you suggested that since the sun was out, we could go for a bike ride. Then when you were ready to go, it was cloudy and cool. You made it as far as the porch. When I went to get the van, you went back inside. What is it about you that does that? Am I supposed to intuit your change in plans? Just give me a final decision.

I rode by myself, and it was cold. I went for just under a half hour. It was exercise.

You are still tired. Unusually tired. You spent the day resting. It wasn't until I went to see Dad and go to Risen that you got up and did a little exercise.

I read a little on pancreatic cancer. I heard about a new pancreatic cancer treatment but couldn't find much reference on the internet. We are getting ourselves ready for your appointment on Tuesday morning. I have learned there are three ratings of pancreatic cancer: T, N or M and varying degrees within each category. T levels are for the size and location of the tumor, N are for evidence of spread to the lymphatic system, and M are for the types of metastasis. I think you are a T but we don't know whether or not there is any evidence of cancer cells in the lymph. We need to ask. There are other tests that can be given. We will have to ask about those too.

Saturday and I Don't Care How Many Shopping Days Are Left

Rereading yesterday's blog sheds light on the extent of my anger. You have stress; it's called pancreatic cancer. I have tried to help you get to a point where it is the only stress in your life. In doing so, I have assumed too much stress. You were offended I didn't think you had stress. I had left out the cancer part because I frequently omit the obvious. In my mind it goes without saying but I shouldn't make that assumption. My bad. We discussed stress twice this morning, and I think we both felt better. To not have dissonance now would be abnormal.

Today was the long-awaited trip to Bob's Big Boy, the original Bob's Big Boy, with S & L. It was more than I had expected and, except for you doing Mr. Toad's Wild Ride, we had a great time. That car is so sporty that riding in the back seat is uncomfortably bumpy. But I wasn't so nauseous I couldn't enjoy a cheeseburger and fries. I'm not a fries eater but those things were delicious! The excursion and the crowds-----it's a very popular place----exhausted you. Maybe you had had too much exercise in the past few days, maybe you weren't quite strong enough for all the excitement, maybe it's the cancer or being post-op, but you did some serious napping when we got home.

This evening was the annual neighborhood potluck. How I LOVE that party! You were too tired to go. Too many exercise classes at the Wellness Community and the trip to Bob's.. I had the best time. We have wonderful neighbors, and a lot of them have had cancer. Besides the great time, I made some great connections and got lots of cancer info. One of our neighbors even has the same oncologist you have.

For Friday the 4th

The Wellness Community has given you a place to go and things to do. It is exactly what you need. You have decided you will go to everything during the next couple of weeks to figure out what it is you want to do regularly.

I have been busy working on the inquiry project for mentoring, planning lessons for my own class, meeting with people over various things, and running to see Dad. He isn't happy in the care center but he's not really complaining. He shares a room with a former army colonel, a man who was married but never had any children, who lost his wife last week but lost his mind long before. The man starts each day at 6:00 yelling nonsense. (It's better than playing a bugle....) The space is small, I feel cramped there, Dad feels cramped there. How or when he comes home is not gelling in my mind and I worry I won't be ready for it when they suddenly announce Dad is released. You have already started making noises about putting Dad in a facility near our house, your needs being foremost in your mind now, the need for 'destressing' your life leading the charge. You said you only thought Dad was going to live six months or so when you invited him to live here. You said you have 'given him a year of your life'. You said you never liked him in the first place; we already know that. I just thought you were taking him in because it is the right thing to do. That's what you said back then. We were going to take care of my dad because he had always been supportive and helpful to me. We were going to model for our daughter how we wanted to be treated in our old age. Well, I guess that one is moot now for you, so why bother modeling for the kid? I'm the only one who might need to be cared for and right now I don't feel like my needs matter. How you are changing your tune, as my mom used to say. You are grasping for reasons to get him out. I just think it's wrong. As far as I'm concerned ---or compared to me, let's say----you don't have any stress in your life. You don't work, you don't pay bills, you don't have to give me a penny of your Social Security check, you don't cook unless you want to, you don't pick up after yourself, you don't clean, not even before you had cancer. When this all started I said the only thing that would push me over the edge would be if I had to run to a facility to see Dad and deal with you and my job as well. Now guess what you're trying to do......always standing around stop signs. Always pushing your agenda. I'm sorry I can't feel sympathy for your need to 'destress' while ramping my stress into the red zone. I am angry.

Wednesday

Despite Dad being out of the house, I don't feel there is much let up for us. My job has the occasional week where I have meetings and meetings. Even though I have dropped off just about everything I can at work, there is one mentoring obligation I must fulfill, and it involves work that can stack up. This week it is stacking in a way that requires me to spend several hours in meetings. So far I've been in four hours of work for this, and even with three more, I will feel like I'm behind.

My students are acting out and I need to do some reflection on why it's happening. I can't be too distracted by the need for outside problem-solving I need to do. I can't let it slide.

You want to get involved at the Wellness Community by participating in workshops, exercise classes and support groups. Today you called at lunch while I was sitting next to Julie. She gave you the run-down on what they have to offer. You want to attend a support group on Thursday evenings. You'll go to one group; I'll go to another. We'll get support. We'll feel like there is some hope.

The Power of the Mind

This is the first day of me working, running to see Dad, and coming home to you. Already I remember what it was like when Dad was in the health center last year, and I don't like it.

At work, things can be absolutely crazy, and yet it feels refreshing. My kids were wild today because we started a new art program, a teacher covered for me while I did an observation on my beginning teacher, and we did our first calendar. They were nuts. B was out of control hitting, kicking, bothering, you name it. But I love going to work; it is my connection with normalcy. Children are fascinating, even when they are being little turkeys.

This evening we went to an orientation meeting for cancer patients and their families. The overall message was 'you can use your mind as a powerful tool in your cancer treatment' and 'the right mental attitude can be a powerful companion to cancer treatment'. They have lots of speakers, meetings and activities, all for free. We are tired now. Time for bed.