That, in itself if exciting. I finished my home infusions on April 15 and have been engrossed in CNN since then, what with the bombing, shooting, capture, etc, then the explosion in Texas. Now we have wildfires in California, starting the fire season several months early. Then there's the big organization project. It is quite something. Glenn is happy to throw out cans of garbage. I must say, I didn't feel even a twinge of guilt throwing away papers dated 1991. Now they were stuck away in a drawer and hadn't been touched since forever, still, clearing out that space made room for more stuff to file and forget about. Good me!
And the completed knitting projects are piling up too. I finished the prayer shawl and started a new one. I have yarn for about three more after that. The beauty of a prayer shawl is that when I finish it, I take it to church and THEY get to store it! isn't that amazing?
It can't decide if it is going to be hot or cold. Naturally, I prefer cold, because you can always pile on blankets. We might even get rain next week.
I think I have three doctor appointments and a chapter meeting next week. I have such a busy social life. Got the invitation to Victoria and Brian's wedding today. It sounds serious once the invitations are in the mail. I made our hotel reservation, so I guess Glenn and I are going.
Guess I'd best get to sleep so that I don't sleep through either my breakfast or church.
xxooxx
Sunday, May 5, 2013
Thursday, April 18, 2013
New Legs
I'm done with home infusion. I'm done with cellulitis. I have ankles! I lost 20 pounds, mostly fluid, in the hospital, and I'm walking around on sticks. I say mostly fluid because I wasn't eating that much and the food was pretty awful.
I have to weigh myself every morning. If I go up more than a pound or two, I have to regulate my Torsemide. If I stay around my set weight, then I just take maintenance doses. Put on weight, increase the torsemide. Not that we wouldn't be happy for me to lose dry weight, too, it's just that I have to watch fro swelling. This is my second year of cellulitis. I don't want it again--for any number of reasons.
Knitting projects--I finished three octopus hats--though one of them is in hiding--and a gold shawl. The shawl needs pressing, then it will be gorgeous. I'm about 2/3 through with a prayer shawl. They are boring to knit and boring to finish, but oh so comfy to cuddle up in, so I keep making them, I'm also working on another shawl that used a hank from one of the bins! Now that is exciting. And I haven't ordered any new yarn. It seemed like such a good idea in the hospital, but it was too hard to get up and get out a credit card. And everyone would yell at me it I ordered more.
Today's project was getting the Chapter's membership pages in order. It was a monumental task, but I now have it under control--more or less. I have stacks of pages of deceased and demitted and suspended member pages to organize--I figured it was more important to take care of the live members first. At the same time, I'm organizing my office--talk about your monumental task. I figure it's OK to dump floppy disks, since nothing I have uses those anymore. I'm going back to my "10 Things a Day." It's ok to do more than 10, but I have to do at least 10, and 10 things makes an actual dent.
Next exciting thing--I'm driving! I didn't really feel safe driving between hospitalizations, while I was working myself off the primidone. That's long gone. I can down and up a flight of stairs without getting winded. I get tired, but that isn't the same thing. Yosemite is a month away, so I need to start walking. Maybe I can do my walking in Macy's or Nordstrom's. Except for one Christmas present, I haven't put my nose in a department store.
It's past my bedtime. Time to slather my legs with mineral oil--that's supposed to keep me from picking off the dead skin-there's LOTS of that.
xxooxx
I have to weigh myself every morning. If I go up more than a pound or two, I have to regulate my Torsemide. If I stay around my set weight, then I just take maintenance doses. Put on weight, increase the torsemide. Not that we wouldn't be happy for me to lose dry weight, too, it's just that I have to watch fro swelling. This is my second year of cellulitis. I don't want it again--for any number of reasons.
Knitting projects--I finished three octopus hats--though one of them is in hiding--and a gold shawl. The shawl needs pressing, then it will be gorgeous. I'm about 2/3 through with a prayer shawl. They are boring to knit and boring to finish, but oh so comfy to cuddle up in, so I keep making them, I'm also working on another shawl that used a hank from one of the bins! Now that is exciting. And I haven't ordered any new yarn. It seemed like such a good idea in the hospital, but it was too hard to get up and get out a credit card. And everyone would yell at me it I ordered more.
Today's project was getting the Chapter's membership pages in order. It was a monumental task, but I now have it under control--more or less. I have stacks of pages of deceased and demitted and suspended member pages to organize--I figured it was more important to take care of the live members first. At the same time, I'm organizing my office--talk about your monumental task. I figure it's OK to dump floppy disks, since nothing I have uses those anymore. I'm going back to my "10 Things a Day." It's ok to do more than 10, but I have to do at least 10, and 10 things makes an actual dent.
Next exciting thing--I'm driving! I didn't really feel safe driving between hospitalizations, while I was working myself off the primidone. That's long gone. I can down and up a flight of stairs without getting winded. I get tired, but that isn't the same thing. Yosemite is a month away, so I need to start walking. Maybe I can do my walking in Macy's or Nordstrom's. Except for one Christmas present, I haven't put my nose in a department store.
It's past my bedtime. Time to slather my legs with mineral oil--that's supposed to keep me from picking off the dead skin-there's LOTS of that.
xxooxx
Saturday, April 6, 2013
Transfusion to Transfusion and Beyond
The trouble with not blogging in a long time, is that there is a lot to catch up on. Somewhat more to catch up on than when I wrote the first sentence, which was 10 or so days ago. So this may take a while.
I left a significant detail out of my last blog--at the time thinking it was no biggie. My legs were starting to hurt again, so I had Dr. Chee take a look at them at my appointment on the 11th. Hmmmmm. Looked like cellulitis again. She put me on Ceflex for 10 days
I drove downtown on Valentine's day for a haircut. While I have many friends willing to drive me places, several of them don't drive in San Francisco. I don't quite understand that--it's just like driving anyplace else.
We finally started band practice on the 18. Since it was a holiday, it worked with everyone's schedule. We welcomed a new flutist to the band. We added one new piece and for the rest of it, went with our program from last year. I think I tried to start our practices in January--it took us that long to find a day that worked. Memo to self--start talking about practices in September.
Chemo on the 19th. This chemo is really easy. It is quick and hasn't demonstrated, at least to me, any unpleasant side effects. I had my scan on the 25th.
Bright and early on the 26th, Dory picked me up and we were off to Emeryville to catch the Snow Train to Reno--the very train trip we were supposed to take in 2008--on the very same day. Because we had to cancel rather suddenly in 2008, that being the day of my surgery, I got us first class tickets. This was something that they hadn't had before. It was to celebrate their 50th year of running the train--not steadily, because it hadn't run since the ill-fated 08. Our seats were in the dome car. We in the car had our own attendants and our own dining car. We paid for it, but worth it. The trip was oh so pleasant--smooth, beautiful. There was a rowdy crowd that got on in Sacramento. they came stocked with their own bar. When they found out that drinks were complementary in first class, they really took advantage of it. That was about the only down side of the trip. When we got to Reno, our attendant had arranged for a wheel chair for me. While you could practically spit on our hotel from the train station, on doctor's orders we took a cab rather then schlep our suitcases. Once at the hotel, my wonderful Dory arranged another wheel chair for me. It slowed us down a little, but nowhere near as much as my trying to walk would have. In fact, I did get cocky Wednesday morning and said I didn't need it, since we were just going to breakfast then from machine to machine. I got very tired very quickly. That was solved by a nap. We had dinner at Sterling's. I had rack of lamb, Dory had a fillet. The food was really good and the service was better. We didn't pay too late because we had to be at the train by 9:30 in the morning. We thanked the hotel for the use of the wheel chair, took a cab back across the street to the station, got another wheelchair, got me to the train. The trip home was as smooth as the trip up, and close to on time.
I met my Nephrologist on the first of March--an incredibly nice man with the cutest dimples. He increased my diuretics and had me make an appointment for three weeks to see how things were progressing.
March 4 I had an appointment with Dr. Chee to get the results of the CT. Glenn was working, so Ally drove me. We have this routine when I get scans. Dr. Chee comes into the room and asks "how are you?" I say to her, "I don't know. You're the one with the results. How am I?" This time the answer was "Better." The mass they have been following is somewhat smaller. Yay team! Then we looked at my legs. Oh, no. After 10 days of antibiotics they are not better but worse. Dr. Chee told me to go to the hospital because once again, I needed IV antibiotics. I told her it was the same deal as last year--I'd go after band practice. She may have rolled her eyes, but she has been taking care of me for five years and knows me pretty well by now. So, home we went to pack up the stuff I would need for the hospital. I always need stuff. I don't remember what we did about dinner, but Glenn got me to band practice, we went over our stuff, and then we were off to emergency. I asked the band to be good and practice without me--which they did.
Off to the hospital to check in for what turned out to be an eight day stay. Too long. I had the menu memorized in sort order--not that there was much I wanted to eat. I got my round the clock antibiotics and my shins got better. It no longer hurt to stand on them. I got my chemo in the hospital--which I thought would be no big deal, because it is no big deal when I go to the infusion center. It was a big deal--for everyone but me. I was fine with it--had a visitor, had dinner, no big deal. Went home on the 12th on oral antibiotics--and my legs wrapped in Unnaboots--not the most comfortable things by any stretch of the imagination..
Sometime in February, not quite sure when because it came on gradually, I developed a tremor. It got worse until it was pretty much obvious to anyone. There were times I couldn't control my hands--partial excuse for not blogging sooner. Anyway, I had them take a look at it during my 10 day visit to Peninsula. The doctor put me on medicine that might help. He also had a Neurologist look in on me. A follow up visit was recommended and secured for the 15th.
My second night at home, I woke up around 3, went to the bathroom, then figured since I was awake, I could pull a sneaky on Glenn and spend a little time on the computer. It turned out to be a very little time, because my hands wouldn't cooperate. So I turned out the light and started back to bed. Between the dresser and the bed, I tripped on nothing and did a face plant. Glenn was there in a flash. "Mom, are you all right?" I said, "Busted." Glenn told me I was busted the minute the light had gone on. So was I all right? My dignity was bruised. I had a scrape on my forehead and later discovered a shiner, and hurt my left thumb. Glenn thought I was a little loopier than usual and asked if I had increased my pain meds. Nope. I called the visiting nurse when it was daylight, just to make sure I hadn't done any major damage. When I met with the Neurologist, he took me off the medicine that they tried in the hospital--the only thing it would do was make me loopy--but I had to wean myself off of it. I was taking 4 per day--decrease by one every four days. It will then take your body about four weeks to get out of your system, then come see me. OK. Next was a visit to the lab to have blood work drawn for my Mar 22 follow-up with the Nephrologist.
It was good to go to church on the 17th--it was also good that the Ceili, originally scheduled for that evening, was postponed to the 23rd. We had a practice on the 18th. Glenn took me and Frank brought me home, followed by George so that both of them helped me into the house. I love my band. The 19th was a follow up with the Gastro-enterologist--everything fine there--one down. The 20th was my primary care in the morning--Glenn drove and in the afternoon follow-up with the Vascular Surgeon--it was Glenn's swing day, so Melinda drove me there. Are you getting a recurring there here--I didn't think it was prudent for me to drive for a while. The 21st was an appointment with my CPA for taxes--I carefully wrote down the time then filed it in my mind as a hour later. No problem, they said. I appreciated that. The 22nd was a follow-up with the Nephrologist--who increased my diuretics again and added another pill that retains potassium..
Gretchen got here Friday afternoon. She and Glenn did all the cooking while she was here. We had our final band practice at 6 and got out before the Mohk Yang congregation that meets at our church had their Friday night service. The band gave me a lovely necklace that they had all prayed over. I felt very special.
The Ceili was Saturday the 23rd. I rested in the morning then dressed and got to church around 1 for the 2 PM party. Getting me set up was interesting. Because I needed to keep my legs elevated, I sat in one chair. I had two chairs in front of me, with the backs to the outer sides of my legs. My music stand was between the chairs. Playing was a little awkward, but I managed. We didn't take things quite as fast as usual, but we were good. We had an added treat this year--two bagpipers! That was very cool. During our breaks, Andy led dancing. He asked Gretchen to be his display partner. She had a blast. Frank came prepared with several Irish stories that kept things pretty lively. When people asked how I was, the standard response was as long as I was sitting down and not moving, I was fine. If I got up and moved around, I was in excruciating pain. Even though I was on oral antibiotics, the redness and pain in my legs was moving up. After the show, they insisted that I use the church wheelchair. It helped.
Palm Sunday was a glorious day in many ways. The weather was lovely. Once again I used the church wheelchair. They turned the chair in front of me around so that I could keep my legs elevated. I did not process with palm branches. The service was lovely. After the service, we dedicated a mosaic wall that the church had commissioned and with the help of the community built in honor and memory of those lost in the explosion and fire in 2010, particularly the Bullis family. The mural is beautiful. There was a reception after the dedication. All of that being accomplished, Gretchen and I went to Richmond to see Victoria and Iris. I didn't hold Iris very much because her squirmy little body touching my legs was very painful. Gretchen drove home through Tilden Park, which was lovely. I don't think I've been there since Patti Wieger's wedding in 1994.
Monday was my follow up with the cancer center. I saw Suzanne, the nurse practitioner. She took a look at my legs, then Dr. Chee took a look at my legs. They were redder and shinier and really hurt. They also checked my blood. My red count was very low, so along with a Procrit shot, I got an appointment for a transfusion. I wrote down the appointment, 7:30, which is way early for me--except I put 7:00 in my brain. I woke up at 5, so I had plenty of time for breakfast. Glenn got me to the infusion center a little after 7--to find the door locked. There was one nurse inside setting up for the day. She let us in but told us that they didn't open till 7:30--oops. I sent Glenn home, picked out my chair and knit until they were officially open. Getting a transfusion is very peaceful. I always take plenty of stuff to keep me entertained, then sleep through most of it. Melinda picked me up when it was over. We ran a few errands and then she took me to my next appointment. When they cur of the Unnaboots, Melinda said that my legs were so much worse than the previous week. My appointment was with the doctor's assistant. She asked for the doctor to come in and look at them, since he had seen them the week before too. He stuck his head in the door and said "Oooooh. Hospital--now" I asked if I could go home first and get my hospital stuff. No. Hospital. Now. They are waiting for you in admissions. So downstairs we went and over to admissions. I said it would probably take a while to get my room ready, since that is what usually happens when I'm admitted from emergency. Could I go home and get my stuff. No, your room is ready. Whoosh and we were in room 3743. I texted Glenn and Ally. Bless her heart, Ally took her break to come home and get my stuff together. I gave Melinda my keys and thanked her profusely. There began another 10 days in the hospital. The whole while I was there, I was afraid that they would make me go to a Skilled Nursing Facility to get my antibiotics--I was getting them round the clock. I did not want to go-big time I didn't want to go. Eventually, I won. My Infectious Disease specialist changed my antibiotics to something I could infuse at home--which I am doing even as I type the end of this piece. I'm not going to bore you with my ten days lying in bed, most of the time with my feet higher than my heart. Suffice it to say that I now have ankles and I'm walking around on sticks. I lost about 20 pounds of fluid. They are hoping I can lose another ten or so pounds, then I have to watch for swelling or redness or pain. I can do that. I'm very happy to be home. I have 9 more days of home infusion. I can do that.
I'll try not to let another two months go by, faithful readers.
xxooxx
I left a significant detail out of my last blog--at the time thinking it was no biggie. My legs were starting to hurt again, so I had Dr. Chee take a look at them at my appointment on the 11th. Hmmmmm. Looked like cellulitis again. She put me on Ceflex for 10 days
I drove downtown on Valentine's day for a haircut. While I have many friends willing to drive me places, several of them don't drive in San Francisco. I don't quite understand that--it's just like driving anyplace else.
We finally started band practice on the 18. Since it was a holiday, it worked with everyone's schedule. We welcomed a new flutist to the band. We added one new piece and for the rest of it, went with our program from last year. I think I tried to start our practices in January--it took us that long to find a day that worked. Memo to self--start talking about practices in September.
Chemo on the 19th. This chemo is really easy. It is quick and hasn't demonstrated, at least to me, any unpleasant side effects. I had my scan on the 25th.
Bright and early on the 26th, Dory picked me up and we were off to Emeryville to catch the Snow Train to Reno--the very train trip we were supposed to take in 2008--on the very same day. Because we had to cancel rather suddenly in 2008, that being the day of my surgery, I got us first class tickets. This was something that they hadn't had before. It was to celebrate their 50th year of running the train--not steadily, because it hadn't run since the ill-fated 08. Our seats were in the dome car. We in the car had our own attendants and our own dining car. We paid for it, but worth it. The trip was oh so pleasant--smooth, beautiful. There was a rowdy crowd that got on in Sacramento. they came stocked with their own bar. When they found out that drinks were complementary in first class, they really took advantage of it. That was about the only down side of the trip. When we got to Reno, our attendant had arranged for a wheel chair for me. While you could practically spit on our hotel from the train station, on doctor's orders we took a cab rather then schlep our suitcases. Once at the hotel, my wonderful Dory arranged another wheel chair for me. It slowed us down a little, but nowhere near as much as my trying to walk would have. In fact, I did get cocky Wednesday morning and said I didn't need it, since we were just going to breakfast then from machine to machine. I got very tired very quickly. That was solved by a nap. We had dinner at Sterling's. I had rack of lamb, Dory had a fillet. The food was really good and the service was better. We didn't pay too late because we had to be at the train by 9:30 in the morning. We thanked the hotel for the use of the wheel chair, took a cab back across the street to the station, got another wheelchair, got me to the train. The trip home was as smooth as the trip up, and close to on time.
I met my Nephrologist on the first of March--an incredibly nice man with the cutest dimples. He increased my diuretics and had me make an appointment for three weeks to see how things were progressing.
March 4 I had an appointment with Dr. Chee to get the results of the CT. Glenn was working, so Ally drove me. We have this routine when I get scans. Dr. Chee comes into the room and asks "how are you?" I say to her, "I don't know. You're the one with the results. How am I?" This time the answer was "Better." The mass they have been following is somewhat smaller. Yay team! Then we looked at my legs. Oh, no. After 10 days of antibiotics they are not better but worse. Dr. Chee told me to go to the hospital because once again, I needed IV antibiotics. I told her it was the same deal as last year--I'd go after band practice. She may have rolled her eyes, but she has been taking care of me for five years and knows me pretty well by now. So, home we went to pack up the stuff I would need for the hospital. I always need stuff. I don't remember what we did about dinner, but Glenn got me to band practice, we went over our stuff, and then we were off to emergency. I asked the band to be good and practice without me--which they did.
Off to the hospital to check in for what turned out to be an eight day stay. Too long. I had the menu memorized in sort order--not that there was much I wanted to eat. I got my round the clock antibiotics and my shins got better. It no longer hurt to stand on them. I got my chemo in the hospital--which I thought would be no big deal, because it is no big deal when I go to the infusion center. It was a big deal--for everyone but me. I was fine with it--had a visitor, had dinner, no big deal. Went home on the 12th on oral antibiotics--and my legs wrapped in Unnaboots--not the most comfortable things by any stretch of the imagination..
Sometime in February, not quite sure when because it came on gradually, I developed a tremor. It got worse until it was pretty much obvious to anyone. There were times I couldn't control my hands--partial excuse for not blogging sooner. Anyway, I had them take a look at it during my 10 day visit to Peninsula. The doctor put me on medicine that might help. He also had a Neurologist look in on me. A follow up visit was recommended and secured for the 15th.
My second night at home, I woke up around 3, went to the bathroom, then figured since I was awake, I could pull a sneaky on Glenn and spend a little time on the computer. It turned out to be a very little time, because my hands wouldn't cooperate. So I turned out the light and started back to bed. Between the dresser and the bed, I tripped on nothing and did a face plant. Glenn was there in a flash. "Mom, are you all right?" I said, "Busted." Glenn told me I was busted the minute the light had gone on. So was I all right? My dignity was bruised. I had a scrape on my forehead and later discovered a shiner, and hurt my left thumb. Glenn thought I was a little loopier than usual and asked if I had increased my pain meds. Nope. I called the visiting nurse when it was daylight, just to make sure I hadn't done any major damage. When I met with the Neurologist, he took me off the medicine that they tried in the hospital--the only thing it would do was make me loopy--but I had to wean myself off of it. I was taking 4 per day--decrease by one every four days. It will then take your body about four weeks to get out of your system, then come see me. OK. Next was a visit to the lab to have blood work drawn for my Mar 22 follow-up with the Nephrologist.
It was good to go to church on the 17th--it was also good that the Ceili, originally scheduled for that evening, was postponed to the 23rd. We had a practice on the 18th. Glenn took me and Frank brought me home, followed by George so that both of them helped me into the house. I love my band. The 19th was a follow up with the Gastro-enterologist--everything fine there--one down. The 20th was my primary care in the morning--Glenn drove and in the afternoon follow-up with the Vascular Surgeon--it was Glenn's swing day, so Melinda drove me there. Are you getting a recurring there here--I didn't think it was prudent for me to drive for a while. The 21st was an appointment with my CPA for taxes--I carefully wrote down the time then filed it in my mind as a hour later. No problem, they said. I appreciated that. The 22nd was a follow-up with the Nephrologist--who increased my diuretics again and added another pill that retains potassium..
Gretchen got here Friday afternoon. She and Glenn did all the cooking while she was here. We had our final band practice at 6 and got out before the Mohk Yang congregation that meets at our church had their Friday night service. The band gave me a lovely necklace that they had all prayed over. I felt very special.
The Ceili was Saturday the 23rd. I rested in the morning then dressed and got to church around 1 for the 2 PM party. Getting me set up was interesting. Because I needed to keep my legs elevated, I sat in one chair. I had two chairs in front of me, with the backs to the outer sides of my legs. My music stand was between the chairs. Playing was a little awkward, but I managed. We didn't take things quite as fast as usual, but we were good. We had an added treat this year--two bagpipers! That was very cool. During our breaks, Andy led dancing. He asked Gretchen to be his display partner. She had a blast. Frank came prepared with several Irish stories that kept things pretty lively. When people asked how I was, the standard response was as long as I was sitting down and not moving, I was fine. If I got up and moved around, I was in excruciating pain. Even though I was on oral antibiotics, the redness and pain in my legs was moving up. After the show, they insisted that I use the church wheelchair. It helped.
Palm Sunday was a glorious day in many ways. The weather was lovely. Once again I used the church wheelchair. They turned the chair in front of me around so that I could keep my legs elevated. I did not process with palm branches. The service was lovely. After the service, we dedicated a mosaic wall that the church had commissioned and with the help of the community built in honor and memory of those lost in the explosion and fire in 2010, particularly the Bullis family. The mural is beautiful. There was a reception after the dedication. All of that being accomplished, Gretchen and I went to Richmond to see Victoria and Iris. I didn't hold Iris very much because her squirmy little body touching my legs was very painful. Gretchen drove home through Tilden Park, which was lovely. I don't think I've been there since Patti Wieger's wedding in 1994.
Monday was my follow up with the cancer center. I saw Suzanne, the nurse practitioner. She took a look at my legs, then Dr. Chee took a look at my legs. They were redder and shinier and really hurt. They also checked my blood. My red count was very low, so along with a Procrit shot, I got an appointment for a transfusion. I wrote down the appointment, 7:30, which is way early for me--except I put 7:00 in my brain. I woke up at 5, so I had plenty of time for breakfast. Glenn got me to the infusion center a little after 7--to find the door locked. There was one nurse inside setting up for the day. She let us in but told us that they didn't open till 7:30--oops. I sent Glenn home, picked out my chair and knit until they were officially open. Getting a transfusion is very peaceful. I always take plenty of stuff to keep me entertained, then sleep through most of it. Melinda picked me up when it was over. We ran a few errands and then she took me to my next appointment. When they cur of the Unnaboots, Melinda said that my legs were so much worse than the previous week. My appointment was with the doctor's assistant. She asked for the doctor to come in and look at them, since he had seen them the week before too. He stuck his head in the door and said "Oooooh. Hospital--now" I asked if I could go home first and get my hospital stuff. No. Hospital. Now. They are waiting for you in admissions. So downstairs we went and over to admissions. I said it would probably take a while to get my room ready, since that is what usually happens when I'm admitted from emergency. Could I go home and get my stuff. No, your room is ready. Whoosh and we were in room 3743. I texted Glenn and Ally. Bless her heart, Ally took her break to come home and get my stuff together. I gave Melinda my keys and thanked her profusely. There began another 10 days in the hospital. The whole while I was there, I was afraid that they would make me go to a Skilled Nursing Facility to get my antibiotics--I was getting them round the clock. I did not want to go-big time I didn't want to go. Eventually, I won. My Infectious Disease specialist changed my antibiotics to something I could infuse at home--which I am doing even as I type the end of this piece. I'm not going to bore you with my ten days lying in bed, most of the time with my feet higher than my heart. Suffice it to say that I now have ankles and I'm walking around on sticks. I lost about 20 pounds of fluid. They are hoping I can lose another ten or so pounds, then I have to watch for swelling or redness or pain. I can do that. I'm very happy to be home. I have 9 more days of home infusion. I can do that.
I'll try not to let another two months go by, faithful readers.
xxooxx
Monday, February 11, 2013
Not as far behind as I thought
Glenn had to work the Tuesday that I left, so I packed the dead body the night before and he put it in the trunk. I got the rest of my things ready to go Tuesday morning, then wondered how I was going to get them all downstairs. I had my computer, CPAP, snacks, books, and yarn--I alawys plan on doing ever so much more than I end up doing, but I need plenty of toys. Just as I was about to start schlepping stuff down, Leo got home. He took it all down in a heartbeat. Thank you, Leo.
The traffic was very light. I got to Sonoma somewhat after 1. I was greeted by the Bellman, who put all my stuff on his cart and took me to my room--181 which we had figured would be perfect on my last trip. I didn't have to check in at the front desk or anything. And the room was ready! I always let them know I will be an early check-in, but it has never been that smooth. I grabbed a swim suit and slippers and went to the spa. I did not use the golf cart because the spa was right across the road from my room. I checked in and was given my locker key. Inside my locker was a bag containing Elli, the Lavender Elephant, and a sweet note from the Spa Fairies There was another lady in the locker room who asked why I got a present. I said, "I'm special." I found out later that they went to considerable pains to get Elli. She was the very first one, before they got their shipment. They really do sweet things for me.
First thing on the program was a Watsu at 2:45 from Lani. Lani is very nice, but she just isn't Soledad. I had a little nap when I was supposed to be knitting, then I had a Sonoma Stone Massage from David. David is one of my favorites. He finally has a woman in his life. I'm pleased about that. I could barely walk after the massage--I had the wall holding me up on one side and David on the other. He walked me back to the locker room--good thing, I was pretty wobbly. I changed and went back to my room, then off to the Big 3 for dinner, and the shock of the vacation. They have taken out the Market. It was a delightful place to nose around and pick up sundries. They turned it into a lounge, complete with wide screen TVs. There is now no place to get sundries at the hotel. There is the Spa Boutique, but it isn't the same. I had dinner then back to the room, where I stayed up too late.
Wednesday morning started with Lemon cottage cheese pancakes for breakfast. I don't like pancakes and I don't like cottage cheese, but I love these. Generally, Lori takes care of me for breakfast. I started the day at the spa with a Spicy Gingerbread scrub and massage. It is wonderful, You smell like a gingerbread cookie and want to eat yourself. That was at 10:15. The yummy smell only lasted so long--at 12:45 I had a Lavender Kur. that is not to imply that you do not smell heavenly after the Lavender Kur--you just don't smell like a cookie. I had a facial at 3:15
Thursday was a very full day. 10:15 Watsu with Glenn, 12:45 Rejuvenating Kur with Diane, 3:15 Tandem Massage with Diane and David--a totally sinful treatment, then at 4:30, Reiki with reflexology with Diane. My Reiki with Diane is better than a CT scan. She knows more about what is going on inside me than my doctor does.
Friday started with a 10:15 Watsu with Laura--Laura's Watsus are pretty fantastic. 12:45 Talasso Spirulina Kur--not the most glamorous treatment, but it sure makes your skin feel good. At 4:30 I had a Thai Massage with Sharon. I usually get them with Bill, but he's on disability--didn't stop him from hanging around the spa, but he just couldn't give treatments.
Saturday I had my pancakes again, and then packed up and checked out. My day was spent in the salon, fingers, toes, and a wonderful hair and scalp treatment when Rudolfo was finished, because i couldn't move. I stopped at the spa boutique to say good by. This time I tool the golf cart back to valet parking. They poured me into my car and filled the trunk. Somehow I made it home without crashing into anyone, and somehow I make it home in the time I told Glenn it would take. I was a puddle of muush. I celebrated my homecoming with a crown coming out. Yippee.
Church was kind of lonely on Sunday. Most of the women were at Westminster Woods for the Women's retreat. It has never appealed to me. I went there once when I was in the 9th grade.
Monday the 28th was chemo. This one is really quick. The only side effect I've noticed is an itchy rash. I have prednisone to treat that. Tuesday, my friends Karen and Ted came and brought lunch. Next month we will have known each other for 50 years. I went to the dentist in the afternoon and got my crown re cemented. Not bad.
Saturday was Barbara DeLand's memorial service. It was harder on me than I expected. The last time I saw Barbara, I was leaving after an appointment with Dr. Chee and Barbara was going for chemo. She got pneumonia shortly after that and went quite quickly. Barbara had bone cancer. I think she was diagnosed sometime after I was. The memorial service reminded me that I too have a terminal illness. I don't feel like I'm going to die soon, but there's always that illness hanging over my head. Glenn and I had planned on going to First Saturday dinner at Sue Bullis's new house. I just didn't have the energy.
Sunday, my nose bled all through church. The worst was when it dripped on my dress. It was Super Bowl Sunday, and at least the blood was 49er's colors. Ken and Roberta Henry wouldn't let me drive myself home. In fact, they wouldn't let me stay home. Roberta drove me home to pick up my knitting and Ken drove my car home. After that, they took me to emergency to get my nose taken care of. We called Glenn, who said he'd be right there. I got my nose cauterized again and my blood sucked. All my numbers were low--that would explain the exhaustion. We sent the Henrys home in time for kick off. In fact, Glenn got me home in time for kick off. He went off to watch the game with friends. I slept till sometime in the third quarter. We lost, so it really wasn't worth waking up.
Monday, Suzanne called me from the Cancer Center with my appointment for a transfusion on Wednesday. What a good idea. It took some work getting there and back. My car was in the shop with an oil leak. It all worked out. Glenn got me there and Ellen Kross from church picked me up and took me home. I had lots of projects with me. I slept most of the time. I got two units of red cells. I've been resting most of the time since then, but I think I do feel better.
That catches me up, I think. I saw Dr. Chee today. She set me up for procrit again and wants me to see a nephrologist--that will be March 1. So there we are. Wednesday is Elaine's birthday. I sent her a letter. I couldn't let it go by without some acknowledgement. Hope she's doing well.
xxooxx
Monday, January 21, 2013
Quality of Life
It's something I've been thinking about a lot lately, possibly because it is something my oncologist and i talk about. I know the smart thing is to focus on the things I can still do and not on the things I can't do any more. I can knit, and I do that quite well. I can read. i can still cook when I want to. I put on a birthday dinner for Ally last night that was lovely. Green salad, mashed potatoes (which turned out to be her brother Danny's almost favorite food), Prime Rib, and birthday cake--store bought. It wasn't hard. We used the good china and the silver and the good crystal. I did the prep work, cooking, and cleaning. I was tired, but I would have been tired before I got sick.
Victoria posted pictures of her and Brian and Iris hiking Mt. Tam today. the pictures were beautiful, but it broke my heart. I could no more do that anymore than fly. And I used to love to hike. When i was a little girl, my Mother said I was part mountain goat. I would go right up the side of the hill.
I had my big adventure last week. I took Bart downtown by myself and walk to my therapist's office and reversed the process, but the next day, climbing up four stairs wiped me out and I was gasping.
Dr. Zipkin suggested I work my way back, and I should try that, walking around Tanforan until the weather improves. This girl hiked the Plane of Six Glaciers 7 years ago and won a BMW (Burly Mountain Woman) certificate! Once again, I wasn't sick and weighed 30 pounds less.
So quality of life. I'm surrounded by people who love me--that's a good thing. I can still set the fiddle on fire--that's a good thing. I can make Christmas cookies--that's good or bad, depending on who eats them. My nose seems to have stopped bleeding--that's a very good thing. I can't go for a walk in the woods. That makes me sad. Allow me some time to mourn for what I can't do, then I'll be myself again.
I'm off to Sonoma on Tuesday--that should perk me up.
xxooxx
Victoria posted pictures of her and Brian and Iris hiking Mt. Tam today. the pictures were beautiful, but it broke my heart. I could no more do that anymore than fly. And I used to love to hike. When i was a little girl, my Mother said I was part mountain goat. I would go right up the side of the hill.
I had my big adventure last week. I took Bart downtown by myself and walk to my therapist's office and reversed the process, but the next day, climbing up four stairs wiped me out and I was gasping.
Dr. Zipkin suggested I work my way back, and I should try that, walking around Tanforan until the weather improves. This girl hiked the Plane of Six Glaciers 7 years ago and won a BMW (Burly Mountain Woman) certificate! Once again, I wasn't sick and weighed 30 pounds less.
So quality of life. I'm surrounded by people who love me--that's a good thing. I can still set the fiddle on fire--that's a good thing. I can make Christmas cookies--that's good or bad, depending on who eats them. My nose seems to have stopped bleeding--that's a very good thing. I can't go for a walk in the woods. That makes me sad. Allow me some time to mourn for what I can't do, then I'll be myself again.
I'm off to Sonoma on Tuesday--that should perk me up.
xxooxx
Wednesday, January 16, 2013
So it's 2013 Already
Where to start. I finished the sweater for the babysitter--quite nice. I'm sure she will be pleased. I got a commission for another baby sweater and Ally would like a sweater for her birthday. I can do that. She won't have it on her birthday, which is Saturday, but it's the thought that counts. She picked it out of a new book that I'm anxious to try, so all in all, it will be an enjoyable project. I'm working on a sweater for Iris--out of yarn on hand. I went to 9 Rubies on Monday and only bought knitting needles--though I did lust over some incredibly beautiful yarn that goes for $47.00/hank. At that price, it had better be beautiful!
Boxing day scan--not bad but not good. the mass is still growing slowly, but we've had two scans with it growing. So we are now on chemo #8, Alimta. It's quick. I didn't have my last infusion of Avastin. The day I was supposed to get it, my blood pressure was too high. The day they postponed it to, Dr. Chee changed me to the new stuff. What I notice is that I can walk just a little bit further before I start gasping. Life is not all bad.
The new washer arrived and is working well. Unfortunately, I also had to get a new water heater and a new dishwasher. It has been an expensive month.
Yesterday, I had lunch with my new friend from Connecticut--the one I make wool mittens for. She was out here visiting her daughter. We had a delightful time. I also had two doctor appointments. My nose started bleeding last week. I called Dr. Chee about it on Friday. She had me go to the hospital for a CBC. She didn't call me back with the results, but it kept bleeding, off and on, so Friday night, Glenn took me to emergency. They cauterized it, which was not at all pleasant--or effective. One of the doctors I saw Monday was my primary care. She didn't seem too concerned. I also have another bleeding site for which she sent me off to see a gastro-entorologist. He prescribed a powder that seems to be helping. Also have an itchy rash on my chest and neck--got a cream for that--it isn't working as fast as the powder.
During all of this, I've been working my buns off for the chapter. I typed up a new roster that I hope will convert to mailing labels, and did all the end of year taxes. That was fun.
So now we're caught up to the middle of the month. I'm off to Sonoma next week. I need the rest.
xxooxx
Boxing day scan--not bad but not good. the mass is still growing slowly, but we've had two scans with it growing. So we are now on chemo #8, Alimta. It's quick. I didn't have my last infusion of Avastin. The day I was supposed to get it, my blood pressure was too high. The day they postponed it to, Dr. Chee changed me to the new stuff. What I notice is that I can walk just a little bit further before I start gasping. Life is not all bad.
The new washer arrived and is working well. Unfortunately, I also had to get a new water heater and a new dishwasher. It has been an expensive month.
Yesterday, I had lunch with my new friend from Connecticut--the one I make wool mittens for. She was out here visiting her daughter. We had a delightful time. I also had two doctor appointments. My nose started bleeding last week. I called Dr. Chee about it on Friday. She had me go to the hospital for a CBC. She didn't call me back with the results, but it kept bleeding, off and on, so Friday night, Glenn took me to emergency. They cauterized it, which was not at all pleasant--or effective. One of the doctors I saw Monday was my primary care. She didn't seem too concerned. I also have another bleeding site for which she sent me off to see a gastro-entorologist. He prescribed a powder that seems to be helping. Also have an itchy rash on my chest and neck--got a cream for that--it isn't working as fast as the powder.
During all of this, I've been working my buns off for the chapter. I typed up a new roster that I hope will convert to mailing labels, and did all the end of year taxes. That was fun.
So now we're caught up to the middle of the month. I'm off to Sonoma next week. I need the rest.
xxooxx
Sunday, December 30, 2012
Christmas
Christmas Eve was lovely. I read fro the King James Version, which always pleases certain members of the congregation. I think I have to read from The Message on Sunday and I'm afraid the words may stick in my throat. It's sort of a hippy-dippy Bible--about as far as you can get from the poetry of the KJV. Maybe I'll take my KJV, just in case.
Christmas was delightful. Glenn let me sleep in. I got up around 10 and made waffles for him--about the only family tradition we have for Christmas. We exchanged gifts, then I took a nap. We drove to Victoria's in a driving rain storm--my idea of perfect Christmas weather. Gretchen's whole family was there, and that was delightful. I don't see Kyle that often, and he is my favorite nephew. Chaia and Cassidy liked their hats and mittens. I think I'll do the same thing for Kyle--I have yarn left and an adult pattern. Iris was a delight to play with. Her little personality is starting to emerge.
Dinner was nice and there was NO DRAMA. It was just a pleasant time with dearly loved family.
Wednesday noon, I had a CT scan. It took six tries and the head doctor to finally get it started, Just before the IV, Paul, a Technician, brought out a Teddy Bear, a gift to me from the hospital foundation. I was touched and never needed it more. They tried to get blood our of each wrist--eventually succeeding, I wasn't screaming, but I did have tears flowing down my face. Paul was helping with the IV and the other Tech was rubbing my head and my back and trying to take my mind off the pain It was pretty exhausting--and i have these things every two months.
Gretchen came over in the late afternoon--good thing--the scan took longer than usual. We decided it was not a movie night, so we fixed leftovers and had an early night.
Thursday was expensive. We went to Home Depot and finally bought a new washer. It was expensive, but a very peasant experience. Each store worker we had anything to do with was knowledgeable, polite, friendly, and a delight doing business with. On man even brought me a scooter to ride around in the store when I started gasping for breath. After we took care of the major purchase, we went to Tanforan and the movie theatres. We saw Les Miz. I wish I'd brought a towel--there were a lot of tears. It was outstanding. We were going to see The Hobbit--on the whole, glad we changed our minds. Besides. I got hit with pretty bad pain Thursday night. I couldn't have handled anything else. I increased my paid meds and am beginning to feel a little better.
Monica came oer on Friday afternoon She gave us a report on the status of things at home--about the sand. But the big news is that Mark has a job! A real tax paying, above board,, job! May he keep it forever!
That's about it. I started on a sweater for Victoria's day-care provider. I was even able to use yarn on hand! Yea! The pile decreases!
That's it--time to sleep.
xxooxx
Christmas was delightful. Glenn let me sleep in. I got up around 10 and made waffles for him--about the only family tradition we have for Christmas. We exchanged gifts, then I took a nap. We drove to Victoria's in a driving rain storm--my idea of perfect Christmas weather. Gretchen's whole family was there, and that was delightful. I don't see Kyle that often, and he is my favorite nephew. Chaia and Cassidy liked their hats and mittens. I think I'll do the same thing for Kyle--I have yarn left and an adult pattern. Iris was a delight to play with. Her little personality is starting to emerge.
Dinner was nice and there was NO DRAMA. It was just a pleasant time with dearly loved family.
Wednesday noon, I had a CT scan. It took six tries and the head doctor to finally get it started, Just before the IV, Paul, a Technician, brought out a Teddy Bear, a gift to me from the hospital foundation. I was touched and never needed it more. They tried to get blood our of each wrist--eventually succeeding, I wasn't screaming, but I did have tears flowing down my face. Paul was helping with the IV and the other Tech was rubbing my head and my back and trying to take my mind off the pain It was pretty exhausting--and i have these things every two months.
Gretchen came over in the late afternoon--good thing--the scan took longer than usual. We decided it was not a movie night, so we fixed leftovers and had an early night.
Thursday was expensive. We went to Home Depot and finally bought a new washer. It was expensive, but a very peasant experience. Each store worker we had anything to do with was knowledgeable, polite, friendly, and a delight doing business with. On man even brought me a scooter to ride around in the store when I started gasping for breath. After we took care of the major purchase, we went to Tanforan and the movie theatres. We saw Les Miz. I wish I'd brought a towel--there were a lot of tears. It was outstanding. We were going to see The Hobbit--on the whole, glad we changed our minds. Besides. I got hit with pretty bad pain Thursday night. I couldn't have handled anything else. I increased my paid meds and am beginning to feel a little better.
Monica came oer on Friday afternoon She gave us a report on the status of things at home--about the sand. But the big news is that Mark has a job! A real tax paying, above board,, job! May he keep it forever!
That's about it. I started on a sweater for Victoria's day-care provider. I was even able to use yarn on hand! Yea! The pile decreases!
That's it--time to sleep.
xxooxx
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