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
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