Another fairly uneventful week. One daughter leaves, another daughter arrives. Becca will be here most of the summer. She's working on her dissertation....or so she says. No, she is, I'm sure. Meanwhile I suffer the slings and arrows of outrageous chemotherapy. This go around has just been a little harder. Some of it probably has to do with my mental state during the chemo itself. I'm hoping that my friend who is also going through chemo now has a smoother visit on Tuesday than I did last Wednesday. Surely by now they will have ironed out the wrinkles and figured it all out.
I went to see UP with Becca on Friday. What a great movie. We saw it in 3-D and loved every minute of it. Two thumbs up!
Friday afternoon I had an interesting encounter with the Dept of Disability or whatever their their moniker is. I haven't gotten any checks from them since March 23 and I hadn't really given it much thought (chemo brain!). Thank goodness I have a husband who hasn't lost his job! But it did seem like something that should be cleared up. So I dialed the 800 number. After waiting on hold for about 10 minutes (which I really won't complain about because I have something better to complain about) I got far enough into the conversation with the assister (hmmm, according to spellcheck and my Merriam-Webster there is no such word) to find out that according to their records I was at work. Then they hung up on me. So I called back. 10 more minutes on hold and then the same conversation. And again they tell me I am back at work....and again they hang up on me. We were having a civil exchange of words so I don't think it was deliberate or in anger. But it happened. So I tried calling back again but unfortunately, we have two phone lines and the other line rang and it was Kaiser and I don't like missing calls from Kaiser. So I gave up on that call and took the call from Kaiser. It seemed that Friday wasn't going to be my day on the phone so I decided to try again on Monday, even though they claim that Mondays and Tuesdays are the worst days to call (or Wednesday through Friday between 10 and 2) Reminds me of the time we were in Yugoslavia in 1973 trying to get a visa to visit Albania. Their Visa office hours were something like the 4th Thursday of each month between 10 a.m. and 10:05 a.m except in months that end in r or y when they are open on the third Tuesday from 2:o5 p.m. to 2:08 p.m. Needless to say we never visited Albania. But I am wandering. This morning I got up bright and early, had my breakfast, gave myself my injection and sat down to be ready to call the disability people first thing at 8 a.m. My first call resulted in the recording saying they weren't open yet but my second call hit pay dirt! I only waited about three minutes and was connected to someone named Jake. I implored him not to hang up on me, gave him the spiel and asked him to go past, " you are reported to be back at work". He liked to sing, you could tell the way he hummed and tra-laed his way through his computer display and I felt this was a harbinger of good things. He got to the magic words that I was at work and I said, so why does it say that? A few moments later he gave me the "good" news. Someone had started to input that I wasn't to receive payments for spring break. Fair enough. I don't get paid for spring break when I am not at work. But they hadn't input that spring break was one week. So according to them I had been on spring break all this time! tee hee. So we straightened that out, I answered a couple of questions and Jake gave me the good news that I would be getting those checks that I missed. And he didn't once ask me accusingly why it took me so long to call them. He just did his job. And I thank him. Thanks, Jake!
A big thank you also to Didi for the Greek themed dinner last night. We loved it!
Monday, June 15, 2009
Wednesday, June 10, 2009
Chemo, chemo, chemo continued
Yesterday I had my blood tests and they were pretty good. I ate well the previous week, went to the gym and drank plenty of liquids. I'm sure it all helped. Also, I was a week longer away from chemo. Couldn't have hurt! So on to chemo #5. The next to the last chemo. whoo hoo!
I arrived at Kaiser at 8:30 in time for my pre-chemo doctor's visit. As I was weighed and measured (height, weight, blood pressure, temperature and oxygen level) the nurse's assistant explained that things might be a little strange and delayed today because Kaiser was introducing a new computer system and today was the first day for them in Chemo. Well, the same thing had been told to me the day before in the lab. And if anything, things went smoother than normal so I wasn't very concerned. Boy howdy, was that a mistake! After a nice visit with Dr. Liu, she took us over to the chemo side of oncology. We waited for her to figure out if we should be brought in or wait in the lounge. Lounge it was. Then a nurse came for us and I chose the chair I always sit in. I don't know why it is so important to me, but I feel best when I can see what the nurses are up to at their computers, I have an easy trip to the restroom and I can see who is coming and going. Again I got the same spiel about the new system and how they were a little behind and still learning. I noticed that there was a huge team of spectators from whom I assumed was the software company, observing the chaos of the chemo room. I haven't ever felt this way before. Normally, there is a quiet calm surrounding the dozens of patients who come in for their treatments. The protocals are meticulously followed. Each patient is carefully identified, each medication is gone over with the patient, each step of the way is carefully announced verbally and documented on the computer. Today, I ended up being very concerned. The nurses were doing their best. It was the first day of the new system. It seemed as if they hadn't actually been prepared for the changeover and were constantly having to repeat input with scanners and keyboards. Most of the stuff that was done at the patient's side normally was done across the room at the desktop computers. I never felt that I was sure that the meds I was getting were mine. I finally asked the nurse to identify all the bags of liquids because it seemed like there were more than I normally received. But that was because I forgot the pepcid. So it was okay but I had to ask and that had never happened before. I also had to wait for the pharmacy to okay and send over the drugs. It took much longer than normal. I assume they were experiencing the same learning curve on their side of the building that we were in chemo. So things started getting backed up. My drips sometimes started beeping and there was no one to check to see if the bag was empty or there was a kink in the line. Usually someone comes over right away to check. Then patients started coming in and taking chairs that had already been assigned to other patients. Tempers started flaring. Patients started threatening to go home. I was beginning to feel a bit stressed because the double booked chair was right next to me and people weren't happy and weren't afraid to let the nurses know. The nurses, to their credit, did their best to assuage the feelings of the troubled patients but it still affected the atmosphere of the room. And me. I read a little and slept a little. But it just didn't feel good this time. I'm sure my next visit will be just fine as they get used to the new system but today was not fun. One note. I put a lidocaine cream over my port each time I have chemo to deaden the pain as they put the needle into the port. I wonder why I bother. I always feel it. It is much more painful than a regular transfusion needle so I wonder if my lidocaine isn't any good or if I put it on too early or too late. Just wondering. When my drip was all finished, the machine beeped and beeped. My nurse was trying to get another patient going and didn't hear the beep. No one else paid attention. Finally I told another nurse that if they were really short chairs someone could have mine. All I needed was to be disconnected from the drip lines and have the needle removed from the port. This was an offer they couldn't turn down. I was released from the chair and off I went to George's for a burger and fries. Then back to Kaiser where I picked up my neupogen from the one pharmacist clerk at Kaiser who has never learned to smile or make a nice comment like "thank you" or "have a nice day". I could hear the nice pharmacist's clerk in the back, helping train someone on the new system. Sigh.
Oh, one thing I should add. During my visit with Dr. Liu, I asked her when we would be able to know how much cancer this chemo was killing. She looked kind of surprise and told me I had forgotten one thing. As far as they are concerned, all the cancer was gone after the surgeries. This chemo is just to make sure it doesn't come back. So when people ask me about my health, I guess I'm not lying when I say I am just fine. And I don't have to say, except for the cancer. Because in Kaiser's opinion, I am cancer free. I hope I understood her correctly.
When I got home I slept for three hours and then had a lovely chicken and rice from math teacher Kevin at WCI. There are three Kevins on staff at WCI! Yum, yum, just what the doctor ordered.
So, now I am down to one chemo heavy left and then nine months of chemo light. And of course, the radiation which will, hopefully, start about this time next month. We will see.
I arrived at Kaiser at 8:30 in time for my pre-chemo doctor's visit. As I was weighed and measured (height, weight, blood pressure, temperature and oxygen level) the nurse's assistant explained that things might be a little strange and delayed today because Kaiser was introducing a new computer system and today was the first day for them in Chemo. Well, the same thing had been told to me the day before in the lab. And if anything, things went smoother than normal so I wasn't very concerned. Boy howdy, was that a mistake! After a nice visit with Dr. Liu, she took us over to the chemo side of oncology. We waited for her to figure out if we should be brought in or wait in the lounge. Lounge it was. Then a nurse came for us and I chose the chair I always sit in. I don't know why it is so important to me, but I feel best when I can see what the nurses are up to at their computers, I have an easy trip to the restroom and I can see who is coming and going. Again I got the same spiel about the new system and how they were a little behind and still learning. I noticed that there was a huge team of spectators from whom I assumed was the software company, observing the chaos of the chemo room. I haven't ever felt this way before. Normally, there is a quiet calm surrounding the dozens of patients who come in for their treatments. The protocals are meticulously followed. Each patient is carefully identified, each medication is gone over with the patient, each step of the way is carefully announced verbally and documented on the computer. Today, I ended up being very concerned. The nurses were doing their best. It was the first day of the new system. It seemed as if they hadn't actually been prepared for the changeover and were constantly having to repeat input with scanners and keyboards. Most of the stuff that was done at the patient's side normally was done across the room at the desktop computers. I never felt that I was sure that the meds I was getting were mine. I finally asked the nurse to identify all the bags of liquids because it seemed like there were more than I normally received. But that was because I forgot the pepcid. So it was okay but I had to ask and that had never happened before. I also had to wait for the pharmacy to okay and send over the drugs. It took much longer than normal. I assume they were experiencing the same learning curve on their side of the building that we were in chemo. So things started getting backed up. My drips sometimes started beeping and there was no one to check to see if the bag was empty or there was a kink in the line. Usually someone comes over right away to check. Then patients started coming in and taking chairs that had already been assigned to other patients. Tempers started flaring. Patients started threatening to go home. I was beginning to feel a bit stressed because the double booked chair was right next to me and people weren't happy and weren't afraid to let the nurses know. The nurses, to their credit, did their best to assuage the feelings of the troubled patients but it still affected the atmosphere of the room. And me. I read a little and slept a little. But it just didn't feel good this time. I'm sure my next visit will be just fine as they get used to the new system but today was not fun. One note. I put a lidocaine cream over my port each time I have chemo to deaden the pain as they put the needle into the port. I wonder why I bother. I always feel it. It is much more painful than a regular transfusion needle so I wonder if my lidocaine isn't any good or if I put it on too early or too late. Just wondering. When my drip was all finished, the machine beeped and beeped. My nurse was trying to get another patient going and didn't hear the beep. No one else paid attention. Finally I told another nurse that if they were really short chairs someone could have mine. All I needed was to be disconnected from the drip lines and have the needle removed from the port. This was an offer they couldn't turn down. I was released from the chair and off I went to George's for a burger and fries. Then back to Kaiser where I picked up my neupogen from the one pharmacist clerk at Kaiser who has never learned to smile or make a nice comment like "thank you" or "have a nice day". I could hear the nice pharmacist's clerk in the back, helping train someone on the new system. Sigh.
Oh, one thing I should add. During my visit with Dr. Liu, I asked her when we would be able to know how much cancer this chemo was killing. She looked kind of surprise and told me I had forgotten one thing. As far as they are concerned, all the cancer was gone after the surgeries. This chemo is just to make sure it doesn't come back. So when people ask me about my health, I guess I'm not lying when I say I am just fine. And I don't have to say, except for the cancer. Because in Kaiser's opinion, I am cancer free. I hope I understood her correctly.
When I got home I slept for three hours and then had a lovely chicken and rice from math teacher Kevin at WCI. There are three Kevins on staff at WCI! Yum, yum, just what the doctor ordered.
So, now I am down to one chemo heavy left and then nine months of chemo light. And of course, the radiation which will, hopefully, start about this time next month. We will see.
Monday, June 8, 2009
Lidless in suburbia
Okay, this is just a short post to pose a significant question the answer of which will decide the fate of the universe. Why do I have lids without containers and containers without lids?
Sunday, June 7, 2009
My weekend continued
Saturday Andy and I drove out to Livermore to see about a new kitchen. Call us crazy. This may not be the best time to redo the laundry room and kitchen but if not now, when? The company we visited could put a plan together quickly and make the bid in a matter of moments. They had the cabinets and counter tops on display so it was fun choosing stuff. But after they printed out the plans and made the bid, Andy and I started dreaming a little bigger and now have completely different ideas for the kitchen. And the laundry room is almost out of the picture now. And now Leah has made a suggestion that we hadn't thought of for the laundry room and we may have to talk to Dennis about moving things around again. It is fun planning and playing around with ideas. We have talked about redoing the kitchen ever since we moved into this house in May, 1988. Every time we got close to doing something about it, something else came up. Bat Mitzvahs, medical bills, college tuition, condo down payments. But, it looks like this time we might do it. I am so excited.
After our journey to Livermore we drove into Berkeley to meet Steve's mom, Marci, who was visiting from Syracuse. We had a great hour or so at the Bateau Ivre chatting about this and that and getting to know one another. Then it was back to Walnut Creek and a rousing evening of Eureka. If you haven't watched this show I recommend it. Look it up on Netflix or watch it on the Science Fiction Channel. We love it!
Sonia, Steve and Marci attended a Bat Mitzvah at Beth El in Berkeley Saturday morning. This morning we were invited to the Bat Mitzvah's home for brunch before taking Sonia and Steve to the airport. We got to meet Steve's cousins and an Aunt and it was interesting and fun to learn more and more about Steve's extended family and friends. After dropping the happy couple off at the airport I attended a Chabad Women's Circle event, Spa for the Soul. The food was catered by our rabbi and the desserts were by Lynn, our resident chocolatier extraordinaire. If you haven't had one of her chocolate peanut butter balls, you haven't lived. The keynote speaker, Esther Hadassa Loewenthal, came all the way from New York to make her stimulating presentation which centered primarily on nutrition and health. She was joined by Betsy Shandalov, a local OT and yoga instructor and Catherina Vaucheret also a local, who is a personal fitness instructor. The panel discussion was lively and instructive. I think everyone who attended found something to which she could relate. My energy started flagging before the event ended so I came home early to find Andy busy planting in our garden. He has really put a lot of work into the garden this year. We have vegetables, new roses and lots of potted flowers growing all over the yard. The garden is really beginning to have a personality. And when the fountain is going, with the lavender scenting the air, it feels like nirvana.
Thank you to Carol and her daughter for bringing us a yummy Chinese dinner tonight. We are feeling so spoiled.
Now I am ready to drop. I am really trying to take it easy so my numbers will be just right this week. Now I think I will just go sit and rest.
After our journey to Livermore we drove into Berkeley to meet Steve's mom, Marci, who was visiting from Syracuse. We had a great hour or so at the Bateau Ivre chatting about this and that and getting to know one another. Then it was back to Walnut Creek and a rousing evening of Eureka. If you haven't watched this show I recommend it. Look it up on Netflix or watch it on the Science Fiction Channel. We love it!
Sonia, Steve and Marci attended a Bat Mitzvah at Beth El in Berkeley Saturday morning. This morning we were invited to the Bat Mitzvah's home for brunch before taking Sonia and Steve to the airport. We got to meet Steve's cousins and an Aunt and it was interesting and fun to learn more and more about Steve's extended family and friends. After dropping the happy couple off at the airport I attended a Chabad Women's Circle event, Spa for the Soul. The food was catered by our rabbi and the desserts were by Lynn, our resident chocolatier extraordinaire. If you haven't had one of her chocolate peanut butter balls, you haven't lived. The keynote speaker, Esther Hadassa Loewenthal, came all the way from New York to make her stimulating presentation which centered primarily on nutrition and health. She was joined by Betsy Shandalov, a local OT and yoga instructor and Catherina Vaucheret also a local, who is a personal fitness instructor. The panel discussion was lively and instructive. I think everyone who attended found something to which she could relate. My energy started flagging before the event ended so I came home early to find Andy busy planting in our garden. He has really put a lot of work into the garden this year. We have vegetables, new roses and lots of potted flowers growing all over the yard. The garden is really beginning to have a personality. And when the fountain is going, with the lavender scenting the air, it feels like nirvana.
Thank you to Carol and her daughter for bringing us a yummy Chinese dinner tonight. We are feeling so spoiled.
Now I am ready to drop. I am really trying to take it easy so my numbers will be just right this week. Now I think I will just go sit and rest.
Of a daughter's visit and a cherry tree
Wednesday brought more than just a cancelled appointment with chemo. But rather than bad news it was a happy occasion. Our daughter Sonia and her boyfriend Steve came into town for a bat mitzvah and visits to Stanford and UC. We enjoyed dinner with them at Bings on Thursday night. Even though it is a short visit we are very happy to see them.
This week I have been sending mental messages to my body encouraging the platelets and white blood cells to behave and get to their proper numbers. I'm hoping that will do the trick. But we will see what we will see.
Thank yous to my friends who have delighted us by bringing dinners this last week. Thank you to Carol for the delectable eggplant parmigiana and to Denise for the scrumptious falafel and dolma medley from Babalous! I can't tell you how much these meals mean to Andy and me. I also would be remiss if I didn't thank my young friends Keeson and Bailee for picking the cherries from my cherry tree this week. I was afraid that the jays, squirrels, and raccoons were going to be the only beneficiaries of the tree's bountiful crop this year. But fortunately for me, these two resourceful young people managed to climb the tree and harvest the cherries. The cherries are deep red, really plump, and full of flavor. We've been feasting on them since harvest day.
And so another week comes to an end. Next week is the last week of school. It feels strange not to be part of the last-minute scurry to get the inventory done. I sort of miss that adrenaline rush as I try to figure out where the last 50 books are that are missing from the inventory. No parents are frantically calling me to find out how much their children owe in lost-book fines. Well, Liz will take care of all that this year, and next year I will get my turn again.
This week I have been sending mental messages to my body encouraging the platelets and white blood cells to behave and get to their proper numbers. I'm hoping that will do the trick. But we will see what we will see.
Thank yous to my friends who have delighted us by bringing dinners this last week. Thank you to Carol for the delectable eggplant parmigiana and to Denise for the scrumptious falafel and dolma medley from Babalous! I can't tell you how much these meals mean to Andy and me. I also would be remiss if I didn't thank my young friends Keeson and Bailee for picking the cherries from my cherry tree this week. I was afraid that the jays, squirrels, and raccoons were going to be the only beneficiaries of the tree's bountiful crop this year. But fortunately for me, these two resourceful young people managed to climb the tree and harvest the cherries. The cherries are deep red, really plump, and full of flavor. We've been feasting on them since harvest day.
And so another week comes to an end. Next week is the last week of school. It feels strange not to be part of the last-minute scurry to get the inventory done. I sort of miss that adrenaline rush as I try to figure out where the last 50 books are that are missing from the inventory. No parents are frantically calling me to find out how much their children owe in lost-book fines. Well, Liz will take care of all that this year, and next year I will get my turn again.
Friday, June 5, 2009
Fun, adventure, disappointment
Last Saturday I had the best day ever! Bright and early I drove from Walnut Creek through San Francisco to Daly City and the Cow Palace. I arrived at the same moment my friend Annabel did. We were both headed to the Camp Store for the AIDS/LifeCycle event. We got to the Cow Palace about 8 a.m. and signed in at the volunteer booth where we were issued spiffy VOLUNTEER shirts. Then we wandered over to the store and met up with Allen with whom I walk and run. The store was set up for the people who would be heading out the next day for Los Angeles on their bicycles, riding in support of the San Francisco AIDS Foundation and the Los Angeles Gay and Lesbian Center. AIDS/LifeCycle is co-produced by the L.A. Gay & Lesbian Center and the San Francisco AIDS Foundation and is designed to advance their shared interest to end the pandemic and human suffering caused by AIDS. Saturday was the day for the riders and roadies to complete their registrations, view a safety video, get their tent assignments and check out the camp store. 545 miles of California roadways would pass beneath their bicycle tires between Sunday morning and the following Saturday where they would end their journey in the L.A. Coliseum. In the store where Annabel and I would be working (along with another dozen or so volunteers) they could purchase jackets, jerseys, socks, tee shirts and lots of cute tchotchkas. And there were premiums for those riders and roadies who had raised a significant amount of money. After familiarizing ourselves with the merchandise, learning how to use the credit card machine and getting a little training on other matters, the doors opened at 10 a.m. and the rush was on. It was a constant stream of riders and roadies without letup until about 2 o'clock. We did get a break for lunch but there was so much excitement in the air it was hard to stay away from the activity for more than a few minutes. The riders and roadies were so nice, so excited and so eager to be on their way. They had prepared for this adventure for months, the riders training and fundraising and the roadies just fundraising. All the roadie's work would along the route, setting up and tearing down the camps each day, putting up the showers, setting up the kitchens, cooking the meals and putting on a performance every night. And they also support the riders along each day's ride, making sure the riders don't get lost, keeping up their spirits and providing assistance with anything that might come up during the ride. I haven't done the LifeCycle or been a roadie but it is certainly inspiring to watch the videos on YouTube and read the blogs of some of the participants. It really makes one want to be a part of it. Well, I guess I was in my own small way, helping at the camp store, but someday, someday, I hope I can be a roadie or do the ride.
We left the store about 4 p.m., leaving the folks who would tear down the store and set up for the ride out the next day. It was a very satisfying experience and I am truly glad I could help.
Sunday I was pretty wiped out from the day before but when Monday came along I was ready for a new adventure. My friend Mary invited me to join her for a drive down to Big Sur. Her sister Ann lives in a lovely wooden home on a mountainside overlooking the coastline. We left home about 10:30 and after a false start (okay, I forgot my purse) we were on our way. Along the way we caught up with some of the AIDS LifeCycle riders and parted ways with them at the King City turnoff. Then we proceeded on to Carmel and had lunch at a charming Swiss cafe called Lugano. From there we drove along the coast to Ann's house were we chatted, I napped and we had delightful dinner and a nice long talk. I got to hear all about the fire last summer that devastated a lot of the Big Sur area and narrowly missed Ann's house. Ann also told us all about her adventures visiting her daughter and family in Africa. After a very comfortable night's slumber we had breakfast, and shared more stories. Then Mary and I headed back to Walnut Creek and Alamo. But not before we stopped at San Juan Bautisita for lunch and ice cream. I had a wonderful time. It was a great break from the quotidian stuff I've been experiencing lately.
Then the disappointment. After returning from Big Sur, I needed to go to Kaiser for my blood tests. I checked out the results online (Kaiser is very good about getting the results posted right away) and the numbers didn't look great but I didn't hear from my physician so I figured everything was okay. Then the next day, 5 minutes before I was to leave for my doctor's appointment and chemotherapy, I got a call from the clinical trials nurse. She told me that the numbers weren't good and I would have to postpone my chemo until the following week. Sigh. It was disappointing and a little frustrating. This puts off the finish of my treatment by a week. That postpones the beginning of my radiation. And that throws off the rest of my chemo light which was timed nicely so I could go to Honolulu in December. Now I'm not sure what will happen. But I'm not going to worry about it because if there is one thing I am learning through all this it is that you really can't count on anything. Things will happen, there will be twists in the path and detours in the journey. But I truly believe that it will all work out in the end.
We left the store about 4 p.m., leaving the folks who would tear down the store and set up for the ride out the next day. It was a very satisfying experience and I am truly glad I could help.
Sunday I was pretty wiped out from the day before but when Monday came along I was ready for a new adventure. My friend Mary invited me to join her for a drive down to Big Sur. Her sister Ann lives in a lovely wooden home on a mountainside overlooking the coastline. We left home about 10:30 and after a false start (okay, I forgot my purse) we were on our way. Along the way we caught up with some of the AIDS LifeCycle riders and parted ways with them at the King City turnoff. Then we proceeded on to Carmel and had lunch at a charming Swiss cafe called Lugano. From there we drove along the coast to Ann's house were we chatted, I napped and we had delightful dinner and a nice long talk. I got to hear all about the fire last summer that devastated a lot of the Big Sur area and narrowly missed Ann's house. Ann also told us all about her adventures visiting her daughter and family in Africa. After a very comfortable night's slumber we had breakfast, and shared more stories. Then Mary and I headed back to Walnut Creek and Alamo. But not before we stopped at San Juan Bautisita for lunch and ice cream. I had a wonderful time. It was a great break from the quotidian stuff I've been experiencing lately.
Then the disappointment. After returning from Big Sur, I needed to go to Kaiser for my blood tests. I checked out the results online (Kaiser is very good about getting the results posted right away) and the numbers didn't look great but I didn't hear from my physician so I figured everything was okay. Then the next day, 5 minutes before I was to leave for my doctor's appointment and chemotherapy, I got a call from the clinical trials nurse. She told me that the numbers weren't good and I would have to postpone my chemo until the following week. Sigh. It was disappointing and a little frustrating. This puts off the finish of my treatment by a week. That postpones the beginning of my radiation. And that throws off the rest of my chemo light which was timed nicely so I could go to Honolulu in December. Now I'm not sure what will happen. But I'm not going to worry about it because if there is one thing I am learning through all this it is that you really can't count on anything. Things will happen, there will be twists in the path and detours in the journey. But I truly believe that it will all work out in the end.
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