Today I got to do one of my favorite things: sit with my coffee. I even posted it on Facebook. But as soon as I did that, the phone rang and it was the man ready to clean the carpets at Dad's condo. And off we went. Still minus breakfast but at least I got to sit with my coffee.
The guy wanted $120 to do the living room and the stairs. I don't think so. You got him down to $80. You crack me up with your persistence in dealing people down on prices. I swept the patio because we had pulled out the indoor/outdoor carpeting yesterday and underneath was WOW! a dirty mess! It took me over an hour and it was raining. Such joy! But the water was actually helpful. And now it's clean. It just doesn't look too good because the patio color isn't uniform. I am hoping they will make it into something that's just right for them, a comfortable play area for their little kids.
I then took the rug shampooer back over to school and recleaned the area where B had poured the liquid cleaner. The stain came out, thankfully. After all, it WAS soap.
Breakfast was at 11:00. Better late than never, and I didn't mind not eating until then.
In the afternoon we went to Whole Foods. Organic this, organic that. Grass-fed, cage-free animals. All the while we were there I kept thinking:"Please don't let me become one of those people who has to have everything organic! It's so weird." We bought very little food but the total came to $123. I don't want to become one of those health nuts.
Saturday, February 27, 2010
Friday, February 26, 2010
Friday, near the end of February
Wednesday has turned into 'therapy day' for me, and I guess it will remain that way for the foreseeable future. One hour in individual therapy and two in the group at the Wellness Community. I usually wait until near the end of the group to speak. When I walk in and we start, I'm always thinking, "I really don't have anything to say." Then as time goes by, something sparks a thought or stirs a memory and I join in the sharing. This time I hadn't shared at all, and it was almost quitting time when the leader asked me if I was worried about money. She's really perceptive and works to make sure we all have time to share during the course of our meeting. She was looking for a way to bring me in, I could tell. I said that what worried me about money was that you had never been the financial partner I had hoped you would be. They already knew about gambling and I let myself feel their reactions to what I was saying: you don't help with the bills, I manage our, Dad's and Laura's finances, you had an inheritance but it's now gone, there is no life insurance. My only hope is that you don't leave me with debts to pay, neither from medical expenses nor from credit cards. I don't think that's too much to ask. Someone asked if you substituted the gambling with shopping but I said, no, you had always been a 'buyer'. I told them your sister had called you a compulsive consumer once, and I thought it had been a perfect description. She had such a good read on you. After that, I felt bad that she isn't part of our lives anymore. I miss her. On the way home you asked me what was on my mind. I didn't want to tell you so I just said I was tired.
B has been a psychotic little pill again. On Wednesday alone he spat in a girl's hair, peed on the bathroom floor on purpose, brought a bottle of Liquid Paper from home and was painting it on the play structure, and then poured a bottle of multi-surface cleaning liquid on the newly-shampooed carpet when he was supposed to be at daycare. After school I had him cleaning up the liquid when the custodian came in. I told him B had to mop the bathroom floor. He said that was okay, he'd do it. I said no, B needs to do it. He said the mop was way too heavy. I said, "Work with me here, Tim. B needs to mop it up. I do this when kids deliberately pee on the floor. I know the mop is heavy." He only had B do it for a little while. Tim's a softie. I emailed B's parents (who are divorced). To Mom I said, "I don't think B is crying out for help; I think he's screaming for it." She agreed, and called some therapists for an appointment for the little darling. Dad came in both Thursday and today to see how B was doing. B does fine while his dad is there.
We went to Dad's condo and vacuumed and shampooed the carpets. The new tenants are moving in late tomorrow. I hope the carpets are dry. The carpet cleaners who were supposed to come were too late. The light is bad and it was dark by the time they called. They'll be there tomorrow morning at 8 am. And the former tenants are starting to ask about their deposit. They are NOT going to be happy when I tell them I had to replace four blinds and pay to have the place cleaned. I am avoiding that conversation.
B has been a psychotic little pill again. On Wednesday alone he spat in a girl's hair, peed on the bathroom floor on purpose, brought a bottle of Liquid Paper from home and was painting it on the play structure, and then poured a bottle of multi-surface cleaning liquid on the newly-shampooed carpet when he was supposed to be at daycare. After school I had him cleaning up the liquid when the custodian came in. I told him B had to mop the bathroom floor. He said that was okay, he'd do it. I said no, B needs to do it. He said the mop was way too heavy. I said, "Work with me here, Tim. B needs to mop it up. I do this when kids deliberately pee on the floor. I know the mop is heavy." He only had B do it for a little while. Tim's a softie. I emailed B's parents (who are divorced). To Mom I said, "I don't think B is crying out for help; I think he's screaming for it." She agreed, and called some therapists for an appointment for the little darling. Dad came in both Thursday and today to see how B was doing. B does fine while his dad is there.
We went to Dad's condo and vacuumed and shampooed the carpets. The new tenants are moving in late tomorrow. I hope the carpets are dry. The carpet cleaners who were supposed to come were too late. The light is bad and it was dark by the time they called. They'll be there tomorrow morning at 8 am. And the former tenants are starting to ask about their deposit. They are NOT going to be happy when I tell them I had to replace four blinds and pay to have the place cleaned. I am avoiding that conversation.
Tuesday, February 23, 2010
Sunday was a relief day for me because I didn't go to church. When I went to wake up Dad, he said he hadn't slept at all during the night and wanted to sleep a little bit. So he slept until almost noon and woke up famished. I had checked on him a couple of times during the morning but the lights were off and the room pitch dark. I cut freesias and did chores. We moved some things around in order to get the monstrous dog cage out of the middle of the family room. But, despite the rearranging, the cage is still in its old place. I went on a bike ride by myself but the wind was ferocious; I was killing myself riding out the jetty but when I looked at the speedometer, I was only going 6 mph. I was pooped! We did a little shopping for the Mediterranean diet you want to start. It's simple enough; just eat what the folks eat on the Mediterranean. Good thing we've been there. Meat, dark green leafies, olive oil, organic, cage-free, natural, natural, natural......
School went by really smoothly but B was on a tear in his own sneaky, psychotic, emotionally-vapid way. During afternoon worktime he took the tops off of four markers and dropped them into the bottles of water we keep for earthquake supplies. After school I noticed the bottles had become bottles of 'colored' water. And I wasn't very amused. We told Mom it's time to seek counseling. I think she's not quite ready to do it. Too bad. He's a mess.
We did a little work at the condo and called on the references for the prospective tenant. Everybody loves him, and his family will have his back no matter what happens. You even spoke to his mom. So we will let him move in. I got a good feeling from him. We finally made it to the Pancreatic Cancer Support Group at the Wellness Community. As we were walking in, a woman waved at me. I knew I knew her but I also knew it wasn't from my Wednesday group at the Wellness Community. It turns out she was someone from the district who retired years and years ago. She also had had a heart attack in early 1980 as a fairly young woman. She was diagnosed with pancreatic cancer a week before you were. She opted to go for treatment with the big mucky muck at UCLA and has had favorable results. Her tumor has shrunk a bit. After the meeting we met Jessica for dinner. You were sort of rude to me at dinner, and I could tell she was a little uncomfortable with it. I couldn't quite figure out what was behind it but after we got home, and I brought it up, you said that I leave you out of conversations and interrupt you when you talk. Hmmmmmm.......I'll have to have more specifics on that because you seem to be quite the talker as far as I'm concerned. I asked you to tap me on the thigh the next time we're in a situation where you are feeling that way so I can tune in to exactly what it is I am doing.
Today we paid to have the condo cleaned. The woman said they speak English and bring all the cleaning supplies. Wrong on both counts. The woman was Russian, didn't speak English, didn't bring a vacuum cleaner, and was dropped off and picked up by some guy in a black Mercedes. What's up with THAT??? I was unhappy with the cleaning job she did. I was really unhappy. I was scraping crud off the insides of the sinks and the showers don't look very good. And NO VACUUM CLEANER!!!! What was she THINKING?? And it was soooooo expensive!
We had a quiet restful evening watching TV. You and I ate a little leftover steak and mixed veggies, then you went to bed in the middle bedroom.
School went by really smoothly but B was on a tear in his own sneaky, psychotic, emotionally-vapid way. During afternoon worktime he took the tops off of four markers and dropped them into the bottles of water we keep for earthquake supplies. After school I noticed the bottles had become bottles of 'colored' water. And I wasn't very amused. We told Mom it's time to seek counseling. I think she's not quite ready to do it. Too bad. He's a mess.
We did a little work at the condo and called on the references for the prospective tenant. Everybody loves him, and his family will have his back no matter what happens. You even spoke to his mom. So we will let him move in. I got a good feeling from him. We finally made it to the Pancreatic Cancer Support Group at the Wellness Community. As we were walking in, a woman waved at me. I knew I knew her but I also knew it wasn't from my Wednesday group at the Wellness Community. It turns out she was someone from the district who retired years and years ago. She also had had a heart attack in early 1980 as a fairly young woman. She was diagnosed with pancreatic cancer a week before you were. She opted to go for treatment with the big mucky muck at UCLA and has had favorable results. Her tumor has shrunk a bit. After the meeting we met Jessica for dinner. You were sort of rude to me at dinner, and I could tell she was a little uncomfortable with it. I couldn't quite figure out what was behind it but after we got home, and I brought it up, you said that I leave you out of conversations and interrupt you when you talk. Hmmmmmm.......I'll have to have more specifics on that because you seem to be quite the talker as far as I'm concerned. I asked you to tap me on the thigh the next time we're in a situation where you are feeling that way so I can tune in to exactly what it is I am doing.
Today we paid to have the condo cleaned. The woman said they speak English and bring all the cleaning supplies. Wrong on both counts. The woman was Russian, didn't speak English, didn't bring a vacuum cleaner, and was dropped off and picked up by some guy in a black Mercedes. What's up with THAT??? I was unhappy with the cleaning job she did. I was really unhappy. I was scraping crud off the insides of the sinks and the showers don't look very good. And NO VACUUM CLEANER!!!! What was she THINKING?? And it was soooooo expensive!
We had a quiet restful evening watching TV. You and I ate a little leftover steak and mixed veggies, then you went to bed in the middle bedroom.
Saturday, February 20, 2010
Saturday, February 20
Today I woke up exceedingly early. I was exhausted but didn't fall back asleep. I was meeting a friend from Bible study for coffee at 8:00. I hadn't seen her in about a year. We had a good, good time. Because of the exhaustion, I cried at one point in the talk. That's not usual for me. It was the point where we talked about God's hand in all of this, and I how I feel frustration at not being able to adequately share my beliefs with you because they live so deeply in the core of my being, where I find things hard to put into words. I believe this is going to be someone else's job. But whose?
We rode bikes and you didn't make it very far before you turned around and went back to the van. I rode for 41 minutes and today I chose to take photos of the ride. I want to memorialize the beauty of our rides in a photo album on Facebook so I rode with my cell phone in my hand. Good thing I didn't drop it!
We rested and you slept. I couldn't. Not even with the exhaustion, not even with the pillow over my head. I got up and drove to Dad's condo, picked up our rug shampooer, and went over to my classroom and shampooed the carpet, at least the part where the kids sit. We call it the 'Rainbow Rug' because it is divided into different colored squares. I hadjust enough time to get some potatoes on the way home so I could make shepherd's pie for us and the Holyfields. Rose is ill again, sounds horrible, and I thought she needed someone to cook for her. She did. She has been in bed all week.
The weather was perfect today, despite forecasts of rain all weekend. The freesias along the walk are beginning to bloom and the aroma is spilling over onto the walkway. I can't wait to cut some and bring them into the house.
We rode bikes and you didn't make it very far before you turned around and went back to the van. I rode for 41 minutes and today I chose to take photos of the ride. I want to memorialize the beauty of our rides in a photo album on Facebook so I rode with my cell phone in my hand. Good thing I didn't drop it!
We rested and you slept. I couldn't. Not even with the exhaustion, not even with the pillow over my head. I got up and drove to Dad's condo, picked up our rug shampooer, and went over to my classroom and shampooed the carpet, at least the part where the kids sit. We call it the 'Rainbow Rug' because it is divided into different colored squares. I hadjust enough time to get some potatoes on the way home so I could make shepherd's pie for us and the Holyfields. Rose is ill again, sounds horrible, and I thought she needed someone to cook for her. She did. She has been in bed all week.
The weather was perfect today, despite forecasts of rain all weekend. The freesias along the walk are beginning to bloom and the aroma is spilling over onto the walkway. I can't wait to cut some and bring them into the house.
Thursday, February 18, 2010
Thursday, February 18
Dad was released from the hospital on Wednesday morning. His heart rate had been abnormally slow because of one of his meds. They decreased the dosage, and the heart rate went back to normal. He is doing well.
We spent a quiet few days with your cold slowly running its course. You have been getting up 5 or 6 times a night lately to urinate, and it bothered you to the point that you made an appointment with a nurse practitioner who did that wonderful gloved-hand check of your prostate before she referred you to a urologist. The urologist did some kind of check-up on you and asked you to try not drinking more than 6 oz. of water after 6pm in the evenings. Maybe that will do the trick. I had noticed that your CT scan results said the dye had not gone as far down as your bladder, so I was worried that you were experiencing some kind of metastasis in that area. The urologist didn't seem to think so. I hope he isn't skipping too quickly over potential dangers.
In my cancer support group I shared that it's hard to celebrate the great news of your latest scan. And I wonder why. It seemed odd that I wasn't rejoicing but others understood. With your diagnosis, reports like this only mean, at best, that you are being given a slight reprieve from the torment of cancer. It means that this will be long. Like a series of storms, you will have some turbulent times and some easy times. This is an easy one. Maybe I can't rejoice because I know how it can turn on us. But we are celebrating our days, and I feel I am laughing and enjoying the small stuff more. I am not getting upset by the little annoyances, the naughty five-year-old behavior or petty differences people have. On some level it's easier to take care of business when I don't sweat it. Like I say, "It's that Nike thing. Just do it."
You spent a whole day talking to medical insurance agents on the phone and filling out papers for Medicare. It is going to be effective in less than two weeks! Can you believe it? You took the AARP supplemental insurance and have a CD of your latest scan to take over to Dr. Rosen at St. John's. Your health is looking good. You have the worst diagnosis of any member of your cancer support group yet you are in the best health of all of them. It's really amazing what's going on.
On Monday I went in to have my annual blood work done. They sent me the results by email and my cholesterol is over 200 again. It's 213. I am going to start taking the grapefruit pectin I bought last year and I'll watch the amounts of fats and sugars I put in my body. I don't know why it jumped up again. I weigh 20 pounds less than I did the last time I had blood work done, and when I did a home cholesterol test in August I got a reading of 145. Color me sad, frustrated and worried about my coronary health.
Today was the 100th day of school. We always make a big deal about it, but it's a complete change in routine and this year's class didn't handle that too well. It was an enjoyable day and the kids had a blast doing all of our activities, but B and S and S and S and K and K lost control of themselves for a while, and the room was a mess. In fact the carpet is really getting on my nerves, and I think I will bring our rug shampooer from home to clean it on Saturday. I can't take it looking like that. And the tables and bookcases are so dirty that I have decided we're going to do shaving cream art on them tomorrow. I spent too much time talking with Caro and Roxie after school so I didn't get my lesson plans written for next week. But I got my progress reports back from the principal who liked them and was wondering why I said Samuelito was late often and the office only have him marked for 5 tardies. Beats me. His dad doesn't sign in and I apparently don't write it down enough. But he's late every day and he doesn't do a lick of work. Being his teacher is a babysitting job and, although I don't think retention is an effective practice, every now and then I come across a child who will benefit from an encore performance in kindergarten, and Samuelito is one of them. The progress reports are in their envelopes and ready to go home. It's a load off of me.
Laura sent me a text message that said all the other students at Marinello's are having their mothers make them aprons, so would I make her one? Of course, I said, and we'd go to Joann's the next time she is here. Tonight I asked her if she was coming this weekend, and she said she didn't think so. I was hoping to get to see her.
We spent a quiet few days with your cold slowly running its course. You have been getting up 5 or 6 times a night lately to urinate, and it bothered you to the point that you made an appointment with a nurse practitioner who did that wonderful gloved-hand check of your prostate before she referred you to a urologist. The urologist did some kind of check-up on you and asked you to try not drinking more than 6 oz. of water after 6pm in the evenings. Maybe that will do the trick. I had noticed that your CT scan results said the dye had not gone as far down as your bladder, so I was worried that you were experiencing some kind of metastasis in that area. The urologist didn't seem to think so. I hope he isn't skipping too quickly over potential dangers.
In my cancer support group I shared that it's hard to celebrate the great news of your latest scan. And I wonder why. It seemed odd that I wasn't rejoicing but others understood. With your diagnosis, reports like this only mean, at best, that you are being given a slight reprieve from the torment of cancer. It means that this will be long. Like a series of storms, you will have some turbulent times and some easy times. This is an easy one. Maybe I can't rejoice because I know how it can turn on us. But we are celebrating our days, and I feel I am laughing and enjoying the small stuff more. I am not getting upset by the little annoyances, the naughty five-year-old behavior or petty differences people have. On some level it's easier to take care of business when I don't sweat it. Like I say, "It's that Nike thing. Just do it."
You spent a whole day talking to medical insurance agents on the phone and filling out papers for Medicare. It is going to be effective in less than two weeks! Can you believe it? You took the AARP supplemental insurance and have a CD of your latest scan to take over to Dr. Rosen at St. John's. Your health is looking good. You have the worst diagnosis of any member of your cancer support group yet you are in the best health of all of them. It's really amazing what's going on.
On Monday I went in to have my annual blood work done. They sent me the results by email and my cholesterol is over 200 again. It's 213. I am going to start taking the grapefruit pectin I bought last year and I'll watch the amounts of fats and sugars I put in my body. I don't know why it jumped up again. I weigh 20 pounds less than I did the last time I had blood work done, and when I did a home cholesterol test in August I got a reading of 145. Color me sad, frustrated and worried about my coronary health.
Today was the 100th day of school. We always make a big deal about it, but it's a complete change in routine and this year's class didn't handle that too well. It was an enjoyable day and the kids had a blast doing all of our activities, but B and S and S and S and K and K lost control of themselves for a while, and the room was a mess. In fact the carpet is really getting on my nerves, and I think I will bring our rug shampooer from home to clean it on Saturday. I can't take it looking like that. And the tables and bookcases are so dirty that I have decided we're going to do shaving cream art on them tomorrow. I spent too much time talking with Caro and Roxie after school so I didn't get my lesson plans written for next week. But I got my progress reports back from the principal who liked them and was wondering why I said Samuelito was late often and the office only have him marked for 5 tardies. Beats me. His dad doesn't sign in and I apparently don't write it down enough. But he's late every day and he doesn't do a lick of work. Being his teacher is a babysitting job and, although I don't think retention is an effective practice, every now and then I come across a child who will benefit from an encore performance in kindergarten, and Samuelito is one of them. The progress reports are in their envelopes and ready to go home. It's a load off of me.
Laura sent me a text message that said all the other students at Marinello's are having their mothers make them aprons, so would I make her one? Of course, I said, and we'd go to Joann's the next time she is here. Tonight I asked her if she was coming this weekend, and she said she didn't think so. I was hoping to get to see her.
Monday, February 15, 2010
Valentine's Weekend
I worked a little late on Friday in the hopes of not having to spend too much weekend time on my progress reports. When I got home you had come down with a cold. I am surprised you lasted this long without coming down with something. Kyle had a cold on our last day in Palm Springs. He had caught it from Laura. You must have picked up the bug that evening when we had dinner at their place.
On Saturday morning we went for a bike ride, you on your electric bike and me pedaling away on my Schwinn. It wore you out and you were in bed for just about the rest of the weekend. I didn't ride again because my back has been stiff since we were in the desert. Either I strained my lower back doing something there or the bed was not good for me because every morning I woke up feeling extremely stiff and achy.
Sunday was Valentine's Day. You were in bed but got up to go buy some beautiful roses and a card for me. It was sweet and beautiful. You told me you couldn't bear to have me go through the day without flowers and that I was the sweetest and smartest woman you know. The card said that for my gift I could choose a day at Burke-Williams spa or dinner and a show (theater). Was there a question there? Dinner and a show. No contest.
I had plenty of time to work on my progress reports. And plenty of time to catch up on this blog. Dad had a runny nose on Saturday and I thought I was doomed to catch one of your colds. Dad seems to have recovered but today he was taken to the hospital because he was feeling disoriented and weak. It might be a very quiet week around here.
On Saturday morning we went for a bike ride, you on your electric bike and me pedaling away on my Schwinn. It wore you out and you were in bed for just about the rest of the weekend. I didn't ride again because my back has been stiff since we were in the desert. Either I strained my lower back doing something there or the bed was not good for me because every morning I woke up feeling extremely stiff and achy.
Sunday was Valentine's Day. You were in bed but got up to go buy some beautiful roses and a card for me. It was sweet and beautiful. You told me you couldn't bear to have me go through the day without flowers and that I was the sweetest and smartest woman you know. The card said that for my gift I could choose a day at Burke-Williams spa or dinner and a show (theater). Was there a question there? Dinner and a show. No contest.
I had plenty of time to work on my progress reports. And plenty of time to catch up on this blog. Dad had a runny nose on Saturday and I thought I was doomed to catch one of your colds. Dad seems to have recovered but today he was taken to the hospital because he was feeling disoriented and weak. It might be a very quiet week around here.
We're Back!
Wednesday you saw your oncologist and asked to have a CT scan soon. She set it up for Thursday. You had trouble sleeping Wednesday night. You probably got a good chance to talk about it, your anxiety, and your thoughts about continuing with the Gemsar and Tarceva at your group that night.
On Thursday there was a little mix-up with your appointment but, true to form, you persevered and they did the scan. The results were ready on Friday. Your oncologist was going on vacation and she wanted to talk with you about the scan before she left. It showed no additional tumor growth. That means you have gone four months without any measurable change in your tumor. That's amazing! That's fantastic! That's unbelievable! How can you be living in the nightmare world of pancreatic cancer with a tumor that isn't growing? And better yet, your cancer hasn't spread to any other part of your body! Could this be another instance where you are an anomaly? An enigma? A freak of nature?
You will take another week to think things over. Will you stay on the Gemsar and Tarceva, or will you jump ship and move to something else? Hmmmmmm...
On Thursday there was a little mix-up with your appointment but, true to form, you persevered and they did the scan. The results were ready on Friday. Your oncologist was going on vacation and she wanted to talk with you about the scan before she left. It showed no additional tumor growth. That means you have gone four months without any measurable change in your tumor. That's amazing! That's fantastic! That's unbelievable! How can you be living in the nightmare world of pancreatic cancer with a tumor that isn't growing? And better yet, your cancer hasn't spread to any other part of your body! Could this be another instance where you are an anomaly? An enigma? A freak of nature?
You will take another week to think things over. Will you stay on the Gemsar and Tarceva, or will you jump ship and move to something else? Hmmmmmm...
Sunday, February 14, 2010
We Need to Talk
There are four words I have come to know mean something huge is up: We need to talk.
On one of our hikes you said them. You wanted to talk about quitting the current chemo protocol you're on. I heard you out. The research says that only 20% of participants benefitted from this Gemsar and Tarceva combination, and of that 20%, their lives were extended by only 18.5%. If the average life-expectancy for a pancreatic cancer patient is eight months, how long is 18.5%? Let's see, eight months is roughly 240 days. 18.5% of 240 days is over a month, 46 days. To you that's not worth it if for the entire time you're uncomfortable. You don't like those odds when you stack them up against the side effects of fatigue, diarrhea and pimply rash. You have contacted PCAN (Pancreatic Cancer Action Network) and are interested in switching medical coverage and getting into a clinical trial. You are interested in quality of life as opposed to length of life. I always thought you would make that choice. As of March 1, you can change insurance carriers and go on Medicare. You want to take one of the supplemental policies offered by AARP. I am so happy this is coming up soon. The timing is perfect. You also said you were going to meet with your oncologist on Wednesday to ask for another CT scan. You are such a great advocate for yourself!
I told you I would support any decision you made. I was glad you weren't deciding to quit chemo altogether and understand why you don't feel this is worth using as your only form of treatment. I said I would be with you until the end, no matter what happens, but the only thing that would make it extremely difficult for me would be to see you in pain. Again, I reminded you I would be there with you if you were in pain, just that that would make it much harder for me. Do I think you won't be in pain sometime during this process? No! But let's don't draw it out.
You said you don't want to be a burden. I reminded you that I married you for better or for worse, in sickness and in health.
On one of our hikes you said them. You wanted to talk about quitting the current chemo protocol you're on. I heard you out. The research says that only 20% of participants benefitted from this Gemsar and Tarceva combination, and of that 20%, their lives were extended by only 18.5%. If the average life-expectancy for a pancreatic cancer patient is eight months, how long is 18.5%? Let's see, eight months is roughly 240 days. 18.5% of 240 days is over a month, 46 days. To you that's not worth it if for the entire time you're uncomfortable. You don't like those odds when you stack them up against the side effects of fatigue, diarrhea and pimply rash. You have contacted PCAN (Pancreatic Cancer Action Network) and are interested in switching medical coverage and getting into a clinical trial. You are interested in quality of life as opposed to length of life. I always thought you would make that choice. As of March 1, you can change insurance carriers and go on Medicare. You want to take one of the supplemental policies offered by AARP. I am so happy this is coming up soon. The timing is perfect. You also said you were going to meet with your oncologist on Wednesday to ask for another CT scan. You are such a great advocate for yourself!
I told you I would support any decision you made. I was glad you weren't deciding to quit chemo altogether and understand why you don't feel this is worth using as your only form of treatment. I said I would be with you until the end, no matter what happens, but the only thing that would make it extremely difficult for me would be to see you in pain. Again, I reminded you I would be there with you if you were in pain, just that that would make it much harder for me. Do I think you won't be in pain sometime during this process? No! But let's don't draw it out.
You said you don't want to be a burden. I reminded you that I married you for better or for worse, in sickness and in health.
Two Weeks Have Flown By
Maybe you all thought I needed a vacation from blogging. Maybe I did. But for sure, I hit a bunch of deadlines at work and we decided to take another mini-vacation. This time we went to Palm Springs. Well, actually it was Palm Desert. I can't decide if Palm Desert is the poor man's Palm Springs or the new and improved version of Palm Springs. It's probably a little of both.
Kyle got us a furnished model apartment for the five days and he and Laura got it all ready for us. And the best part was: it was free! Wow, do I love it when things are free! The weather wasn't all that cooperative. It rained for three out of the five days, but it was good for us to get away. To thank Laura and Kyle we took them to dinner at their favorite Mexican restaurant (La Tablita) and to the Palm Springs Follies. I know people who go out to the desert just to see that show. It's all senior citizens who used to perform in Vegas and on Broadway. It was really good. It was a little expensive too. You drove in a separate car. I always know that means you're going to bail out on me. And you did. You were having extreme diarrhea and intestinal cramping. So you made it only as far as the intermission. The kids and I stayed and enjoyed the rest of the performance. I wish there was a TKTS booth in Palm Springs. The tickets were expensive and there were a fair amount of empty seats.
We took two hikes: one was only a mile long and fairly flat; the other was longer and very, very vertical. Both wore me out and you kept up with me most of the time. We went on a bike ride with the kids but I wasn't able to find any sweet bike paths that went through golf courses. The bike paths are on the streets and you have to share them with golf carts. Yes, people drive their golf carts around town, to the market, on the streets, to shop, not just to golf. So our ride was disappointing. I don't enjoy sharing the road with cars. I could probably handle just the golf carts.
We came home on Tuesday evening. I was back in the saddle again on Wednesday for our minimum day. I had been thinking that my progress reports had to be turned in to the principal by Friday but when I got back I learned they weren't due until the following Tuesday. Knowing I had a three-day weekend to crank out the comments made it easier for me to cope but I still had a pile of work -----and testing----to do.
Kyle got us a furnished model apartment for the five days and he and Laura got it all ready for us. And the best part was: it was free! Wow, do I love it when things are free! The weather wasn't all that cooperative. It rained for three out of the five days, but it was good for us to get away. To thank Laura and Kyle we took them to dinner at their favorite Mexican restaurant (La Tablita) and to the Palm Springs Follies. I know people who go out to the desert just to see that show. It's all senior citizens who used to perform in Vegas and on Broadway. It was really good. It was a little expensive too. You drove in a separate car. I always know that means you're going to bail out on me. And you did. You were having extreme diarrhea and intestinal cramping. So you made it only as far as the intermission. The kids and I stayed and enjoyed the rest of the performance. I wish there was a TKTS booth in Palm Springs. The tickets were expensive and there were a fair amount of empty seats.
We took two hikes: one was only a mile long and fairly flat; the other was longer and very, very vertical. Both wore me out and you kept up with me most of the time. We went on a bike ride with the kids but I wasn't able to find any sweet bike paths that went through golf courses. The bike paths are on the streets and you have to share them with golf carts. Yes, people drive their golf carts around town, to the market, on the streets, to shop, not just to golf. So our ride was disappointing. I don't enjoy sharing the road with cars. I could probably handle just the golf carts.
We came home on Tuesday evening. I was back in the saddle again on Wednesday for our minimum day. I had been thinking that my progress reports had to be turned in to the principal by Friday but when I got back I learned they weren't due until the following Tuesday. Knowing I had a three-day weekend to crank out the comments made it easier for me to cope but I still had a pile of work -----and testing----to do.
Tuesday, February 2, 2010
Groundhog Day
I woke up at 5:15 and tried not to stay awake. But that didn't work. By 6:30 I was up working around the house. I showered and was out the door by 7:45. I ran all day long, it seemed. I even had a meeting during lunch. I was released for the morning to test my students. Rosie took my class. I only got through six of them. Sigh........it takes so long to do each one. I will be released again on Thursday morning to do the same. Somehow I have to get through the whole class, which means calling the daycare kids in after school. I had a team meeting on K, complete with Mom and 17-day-old baby brother. He will improve, I'm sure. It was passed off to the assistant principal to do, and I was afraid she'd do her trick of putting out a little fire with gasoline. But she was on her very best behavior, maybe because the principals told her to take last week off. So it went well.
Someone from the Burzynski Center in Houston sent an email detailing the procedure and initial costs for going there for cancer treatment. You have to be willing and able to travel to Houston with a companion and stay for three weeks or so. They don't work with Medicare or HMO's. The costs mounted up: $500, $1000, $4500, and then $5000 -$15000 a month for the chemo. Scary. You said to forget it. I said to check and see how much a secondary policy, like Anthem would pay. Probably nothing. I think St. John's is a better bet.
I got home at 4:00. You had gone to a lecture on foods that cause inflammation and had had an appointment with the optometrist to see if your retinas are okay now that you have diabetes. They dilated your eyes. You called to see if I'd be able to pick you up if you didn't feel well enough to drive. But then you called later to tell me you were fine to drive home. I don't know exactly how well that went. It was overcast today, not too sunny, but you were driving the van, which is huge. When I came home you were fine but had all the curtains drawn.
I went to dinner with Kathleen. I hadn't seen her in so long, and I love seeing her. She is the one friend I have who understands bipolar disorder, a husband who doesn't manage money well, and she is very deep and extremely open about her faith. She is usually overly-energetic and quite a talker but tonight she was a good listener and gave good advice. She reminded me that I have neglected my spiritual growth over the past few months. I haven't been consistently in the Word and I should be. I had quit the Bible study at church when you were diagnosed in October. Kathleen reminded me that the women's Bible study is only two blocks from our house. I need to get back to it. She's right, you know.
Later in the evening I was typing in this blog and you came to talk to me. I thought I'd just keep on typing because your eyes are still dilated and you can't read this small print from any distance when suddenly you said, "What's Saying Goodbye to You"? Oh, boy! I'd forgotten how large the font is at the top of this thing. I clicked off but you kept persisting. Asking, asking, asking over and over again in your own inimitable style. I told you it was my blog. You wanted to know who gets to read it. I told you. You wanted to read it too. You felt you have a right to know what I'm saying about you. I said no. I need a place where I can say what's on my mind. The more readers I have, the more I'm going to edit out my raw feelings, and I don't want to have to do that. I also don't want you to read the little stuff that bothers me. You have enough to worry about combating your cancer. You don't need to hear about all my fears and dilemnas, not to mention the times you tick me off. I need a place to vent and I won't be able to vent if you're reading it. I'll editorialize too much. I'll take out a lot of the emotion. I don't want to do that; it defeats my purpose for the blog.
Someone from the Burzynski Center in Houston sent an email detailing the procedure and initial costs for going there for cancer treatment. You have to be willing and able to travel to Houston with a companion and stay for three weeks or so. They don't work with Medicare or HMO's. The costs mounted up: $500, $1000, $4500, and then $5000 -$15000 a month for the chemo. Scary. You said to forget it. I said to check and see how much a secondary policy, like Anthem would pay. Probably nothing. I think St. John's is a better bet.
I got home at 4:00. You had gone to a lecture on foods that cause inflammation and had had an appointment with the optometrist to see if your retinas are okay now that you have diabetes. They dilated your eyes. You called to see if I'd be able to pick you up if you didn't feel well enough to drive. But then you called later to tell me you were fine to drive home. I don't know exactly how well that went. It was overcast today, not too sunny, but you were driving the van, which is huge. When I came home you were fine but had all the curtains drawn.
I went to dinner with Kathleen. I hadn't seen her in so long, and I love seeing her. She is the one friend I have who understands bipolar disorder, a husband who doesn't manage money well, and she is very deep and extremely open about her faith. She is usually overly-energetic and quite a talker but tonight she was a good listener and gave good advice. She reminded me that I have neglected my spiritual growth over the past few months. I haven't been consistently in the Word and I should be. I had quit the Bible study at church when you were diagnosed in October. Kathleen reminded me that the women's Bible study is only two blocks from our house. I need to get back to it. She's right, you know.
Later in the evening I was typing in this blog and you came to talk to me. I thought I'd just keep on typing because your eyes are still dilated and you can't read this small print from any distance when suddenly you said, "What's Saying Goodbye to You"? Oh, boy! I'd forgotten how large the font is at the top of this thing. I clicked off but you kept persisting. Asking, asking, asking over and over again in your own inimitable style. I told you it was my blog. You wanted to know who gets to read it. I told you. You wanted to read it too. You felt you have a right to know what I'm saying about you. I said no. I need a place where I can say what's on my mind. The more readers I have, the more I'm going to edit out my raw feelings, and I don't want to have to do that. I also don't want you to read the little stuff that bothers me. You have enough to worry about combating your cancer. You don't need to hear about all my fears and dilemnas, not to mention the times you tick me off. I need a place to vent and I won't be able to vent if you're reading it. I'll editorialize too much. I'll take out a lot of the emotion. I don't want to do that; it defeats my purpose for the blog.
Monday, February 1, 2010
Monday, February 1
This morning you said you had decided we would go to Palm Springs for a little vacation. That was your choice; it's fine with me. Kyle has gotten us a two-bedroom apartment in one of the complexes where he works. We'll go out on Thursday night and stay until Tuesday night. We'll take the bicycles and ride as often as we can. It's supposed to rain a couple days. We'll find something else to do, and we will be in a place where we can just stay inside if we need to. We'll be able to spend Sunday and Monday with Laura and Kyle. I hope to get my hair colored and trimmed on Saturday. I will rush this week to get my students all assessed for progress reports. I'll miss my BTSA meeting next Monday, those things aren't important in the larger scheme of things.
You have been having some intestinal problems lately. On Saturday you said it was the Italian food, that we had just eaten too much, that all the oils and sugars were too much and caused it all to go through you very quickly. Today you were out and remembered that a store near the audiologist's carried Black Crows licorice. After a box (or two?), you were having the same problem as you did on Saturday. But here we have to pause and reflect on whether or not this might be the beginning of a pattern. I don't want to miss some new development because we're explaining away things that happen. This might possibly be signs of another tumor, or more growth in this one.
Quincy's foot has started bleeding again. It might be the same place. Our neighbor came over and looked at it again this evening. He medicated it and bandaged it. We will keep Q-ball inside until we leave for the desert. He is turning out to be, by far, the most expensive dog we've ever owned!
You have been having some intestinal problems lately. On Saturday you said it was the Italian food, that we had just eaten too much, that all the oils and sugars were too much and caused it all to go through you very quickly. Today you were out and remembered that a store near the audiologist's carried Black Crows licorice. After a box (or two?), you were having the same problem as you did on Saturday. But here we have to pause and reflect on whether or not this might be the beginning of a pattern. I don't want to miss some new development because we're explaining away things that happen. This might possibly be signs of another tumor, or more growth in this one.
Quincy's foot has started bleeding again. It might be the same place. Our neighbor came over and looked at it again this evening. He medicated it and bandaged it. We will keep Q-ball inside until we leave for the desert. He is turning out to be, by far, the most expensive dog we've ever owned!
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