March 2, my chest was still hurting and it was hard to breath. Because no one felt like cooking, we decided to order Chinese. Glenn went to the store to get me milk and cereal. I didn't get around to ordering. What I did get was chills. Ally said my hands were like ice and my lips were blue. She asked if I wanted to go to the hospital before or after we had our Chinese dinner. I was shaking, so I crawled under the duvet. Ally called the Visiting Nurses for advice. It was after hours, so they had to page someone who had to call back. They were going to call my doctor for instructions. Swell. My PCP and Oncologist were both out of town. Meanwhile, I was hurting more--pain had moved to my neck and there was no getting comfortable, and I was running a temperature. Now this is a BIG DEAL, because the last time I had a fever was October of 1985. I rarely run a fever. Glenn called 911. We heard the sirens before he'd hung up the phone. They took me back to Peninsula Emergency. They get you right in the doors and into a room, but it doesn't mean you will be seen any quicker. Glenn got there shortly after I did, followed by Ally and Aaron. Ally knows her way around the health care system. Bless her heart, she was putting cold compresses on my face and legs. Elaine got there in record time, having freaked out when Glenn told her about the fever. I think the highest it hit was 100.9--high for me, I generally run subnormal. Ally and Aaron left, Glenn and Elaine stayed till I was in a room and my fever broke. No one ever figured out what was causing the chest pain.
It is not such a good idea to be admitted to a hospital on a weekend. I mean, they take care of you, but nothing really happens till Monday. By Monday, I had four different doctors looking in on me. I had the Hospitalist, my Oncologist's partners, a Vascular Surgeon, and an Infectious Disease specialist. I was on two different IV antibiotics that I had every 8 hours, and another one that I had once a day--at 2 AM. I was in a great deal of pain in the beginning. I expected to see flames shooting up from my shins.
As time dragged by, I got to worrying about things that weren't getting done. Our monthly Eastern Star meeting was coming up. I hadn't done the minutes from February or the Worthy Grand Matron's Official Visit. I had dues receipts to make out and other things to prepare for the meeting--none of which I could do in the hospital--and none of which got done. I felt dreadful about missing the meeting, but I couldn't see myself walking down El Camino Real in my hospital gown, hanging on to my IV pole. Glenn brought the mail that had stacked up, so at least I could pay the bills. I was also starting to worry about the Ceili. I knew it would happen, even if I was still in hospital robes, but we needed to practice together.
By the end of the week, I was pretty much out of pain, but still getting all those antibiotics. They ruled out home infusion because there were so many of them (I think I could have handled it). I didn't need acute care, so the next step was a Skilled Nursing Facility, not so fondly referred to as a SNF. I moved there on Sunday and hated it instantly. I had a private room, for which I was very thankful, but it was loud and just not as nice as my brand new hospital. I did get an OK for Glenn to bring my violin and music so that I could practice, and made arrangements for the band to practice with me on Tuesday evening. That made things better.
When the original decision was made to transfer me to the SNF, I asked how long I'd be there. My doctor (one of them) said about a week, and I freaked. That just couldn't happen. Plans had been made some time ago from my girlhood friend Kris to come for a visit from the 13th to the 15th. My sister was coming to town on the 16th for the Ceili, then there was the Ceili itself. I couldn't be tied up to an IV pole for a week. Dr. Infections Diseases asked me when I'd like to go home (other than the day before) and I said Wednesday would work. So Wednesday it would be.
Kris flew up on the 13th as planned--I had filled her in on my status. She came to the SNF from the airport and we had a nice visit. She looked beautiful and it was wonderful to see her. She left in the early afternoon to get something to eat and check into her motel. The plan was for her to come back in the evening for the Ceili practice. Didn't happen. She got cramps in her legs from our cold, wet weather that wouldn't go away. The pain kept her up all night with no let up. She changed her flight and went home Wednesday. At least we got a little visit.
I had my last antibiotics Wednesday morning. The Vascular Surgeon came by to wrap my legs, to aid in circulation and to keep the swelling down. I was to make an appointment for the following week to get the wrappings off. Glenn says I look like half a mummy. Of course I couldn't get an appointment for the next week, so I'm still wrapped. The paper work was completed Tuesday afternoon, still it took forever to discharge me. Part of the forever was finding a nurse to disconnect my port access. The needle had been changed once a week, but my port had been accessed since the 21st of February--three weeks and a day. I was ready to be disconnected, way ready..
Glenn got me home around noon-time enough for him to get ready for work. I just wanted to rest. Somehow, the house was full of people--reminded me of the end of the first act of You Can't Take it With You. Eventually, things quieted down and I was able to rest under the duvet again. Up at 6:30 to eat some breakfast, because I had a CT scan at 10. Home to rest some more.
Friday, my Ally wasn't feeling at all well. When she came to stay with us, I'd told her that Gretchen was coming on the 16th and that when Gretchen came, she got Glenn's room and Glenn moved to the couch. We found room for Ally with our Deacon, so I knew she would be taken care of. Gretchen arrived in good time. We had dinner and were off to the final Ceili practice.
Saturday morning, I had a phone call from our Deacon, telling me that Ally was in the hospital with gall stones. That would explain the pain.
The Ceili happened as planned and was wonderful. We had a good crowd and a good time was had be all. I truly think the Ceili is the most fun I have all year. We had our somewhat belated Chinese dinner after the festivities.
Sunday was another great day. After church, Gretchen and I went to Marin County, where we spent a wonderful afternoon with our first cousin, once removed, Evelyn, and her daughter, our second cousin, Cami. We haven't seen Cami since Gretchen's wedding in 1969. Evelyn is full on wonderful family stories.
Gretchen headed home Monday morning. I had an appointment with my primary care. She would like me to have a bone scan--that can be done. She also took me completely off Metformin--I'd scaled down from two to one a day the beginning of the year--and my low dose aspirin. The afternoon was a visit with my dentist. my bite splint broke, so he took impressions for a new one. If it isn't one thing, it is another. After that, I went to Seton Hospital to see Ally. To top things off, I had a Trustees meeting at church in the evening. Tuesday was my oncologist. No chemo yet, just to be on the safe side. My CT scan was good but my CA 125 was 46--the highest it has even been, but not high in the grand scheme of things. The afternoon was my follow up with Dr. Shen. He did my surgery in 2008. I see him every 4 months.
Wednesday, Thursday, and Friday, I spent several hours with Ally. She has been one sick little girl. She wanted to come home, but she couldn't keep food down, and that was the deal breaker.
Yesterday we had a monsoon. We need the rain, but really? It rained all day and all night. I went to a memorial service for one of our charter members at church. It was a testament to a life well lived and I was honored to be able to go to it.
Church this morning, then settled down with my feet up for an afternoon on knitting. Best part of the afternoon was when Ally came home. She probably could have used another day or so in the hospital, but she looks better and sounds better, and is very happy to be out. It will be a struggle not to mother hen her too much.
I'll get my legs unwrapped tomorrow. I was ready to tear them off the first night, but I've gotten used to them. I'll get a prescription for support stockings. I've tried them before and they were never comfortable, so we'll see. Tuesday is my therapist (finally) and chemo. Wednesday's a haircut and Friday is taxes.
I'll try not to let so much time pass before the next blog. Not that I really did anything exciting. I have gotten a lot of rest, and that is a good thing.
xxooxx
Sunday, March 25, 2012
Thursday, March 1, 2012
Lots of catching up to do
It has been a while. Let's go back to February 18. It was the Worthy Grand Matron's Official Visit. I was not feeling good. In spite of 10 days of antibiotics the beginning of the month, and another course started the previous Tuesday, my legs were not doing well. They were burning up and peeling. On Tuesday, Dr. Chee said if they didn't get better, I'd need to get IV antibiotics in the hospital. I kept my legs elevated as much as I could and left shortly after the meeting was over. I called Dr. Chee's office and left a message. The on call doctor changed my antibiotic. I saw Dr. Chee on the 21st. She said for me to get to the hospital. Since we'd waited this long, I figured a few more hours wouldn't hurt. It was band practice, after all, and the Ceili is coming up. And we only had an hour to practice.
I packed up all my toys, Glenn and I went to practice, and then he took me to emergency. We got there about 7:10. It was very crowded. It would have been so easy just to get admitted, but it doesn't work like that. It was about 10:30 when we were finally taken to a room in emergency. After the hospitalist heard my little song and dance, he outlined the redness on each leg and agreed to admit me and started me on antibiotics. I sent Glenn home then--trusting him with my car and my violin. I think I made it to a room on the ward around 1:30 Wednesday morning. God bless them, they brought me a turkey sandwich, so starvation was averted. My legs hurt--I expected them to burst into flames. I got to sleep somewhere around 4. I woke up around 9 when food services called to see if I wanted breakfast--they think they are a hotel and have instituted Room Service where you order your meals whenever you want them. The nurses don't care for it very much--I didn't either. Someone talked me into a pneumonia shot. Her technique wasn't the best in the world, but at least the pain in my arm took my mind off the pain in my legs and the usual pain in my abdomen, It still hurts a little, more than a week later. They sent me home on Sunday, the 26th, with a week's worth of IV antibiotics left to take and Visiting Nurses coming on Monday to teach us how to infuse me.
I've had Visiting Nurses a couple of times, so I know how they work. The pharmacy delivered my meds and supplies on Sunday night. I expected to hear from the Nurse Monday morning with a time they would be out. Nine to ten, no call. At 10:30, I called, was connected to the scheduler and left a voice mail. No call back by 11, I called them again. I told the receptionist that I was supposed to get the antibiotic around 1:30. She went off to find the scheduler--who was on the phone, but world call me right back. This time, she did--and told me that the nurse would call and let me know when she would be here. I almost said, "Aren't you the scheduler? Don't you know?" but thought better of it. The nurse called in five or ten minutes and admitted that they had forgotten about me. Not to worry, she was in Pacifica and would be here in about fifteen minutes. She was. Things have been fine since then. Until today.
I woke up around 5, with pain in my upper chest, difficulty taking a deep breath, and pressure. Naturally, I thought it would go away, and went back to sleep. Woke up again around 7:30, still in pain. I had breakfast, still hurting, and considered my options. i finally called the Visiting Nurses, who suggested I check with my oncologist's office. I called them and spoke with the nurse practitioner, who said it needed to be evaluated. Go to Peninsula emergency. Do not pass go, do not collect $200. I called Dory to see if she could take me--yes, of course. Once again, I got my toys together, left a message for Glenn, and waited for Dory. Once at emergency, I said the magic words, "chest pains," and was whisked into a room. Of course, there was no one in the waiting room this time. We were there till about 3:30, during which time they determined I did not have a heart attack and I did not have a blood clot. I did have an EKG, chest x-ray, CT scan, and many blood tests. I'm still uncomfortable, but I'm home. I have a doctor appointment for Monday. Tuesday I'll start chemo again. Dr. Chee didn't want to be whacking at my bone marrow until the infection in my legs was under control. It did throw off my schedule a bit. I should have had chemo on the 28th and the 6th. That way, the Ceili would be at the end of a chemo-free week. Guess I'll have to rely on adrenaline getting me through.
That's it, you are now up to date.
xxooxx
I packed up all my toys, Glenn and I went to practice, and then he took me to emergency. We got there about 7:10. It was very crowded. It would have been so easy just to get admitted, but it doesn't work like that. It was about 10:30 when we were finally taken to a room in emergency. After the hospitalist heard my little song and dance, he outlined the redness on each leg and agreed to admit me and started me on antibiotics. I sent Glenn home then--trusting him with my car and my violin. I think I made it to a room on the ward around 1:30 Wednesday morning. God bless them, they brought me a turkey sandwich, so starvation was averted. My legs hurt--I expected them to burst into flames. I got to sleep somewhere around 4. I woke up around 9 when food services called to see if I wanted breakfast--they think they are a hotel and have instituted Room Service where you order your meals whenever you want them. The nurses don't care for it very much--I didn't either. Someone talked me into a pneumonia shot. Her technique wasn't the best in the world, but at least the pain in my arm took my mind off the pain in my legs and the usual pain in my abdomen, It still hurts a little, more than a week later. They sent me home on Sunday, the 26th, with a week's worth of IV antibiotics left to take and Visiting Nurses coming on Monday to teach us how to infuse me.
I've had Visiting Nurses a couple of times, so I know how they work. The pharmacy delivered my meds and supplies on Sunday night. I expected to hear from the Nurse Monday morning with a time they would be out. Nine to ten, no call. At 10:30, I called, was connected to the scheduler and left a voice mail. No call back by 11, I called them again. I told the receptionist that I was supposed to get the antibiotic around 1:30. She went off to find the scheduler--who was on the phone, but world call me right back. This time, she did--and told me that the nurse would call and let me know when she would be here. I almost said, "Aren't you the scheduler? Don't you know?" but thought better of it. The nurse called in five or ten minutes and admitted that they had forgotten about me. Not to worry, she was in Pacifica and would be here in about fifteen minutes. She was. Things have been fine since then. Until today.
I woke up around 5, with pain in my upper chest, difficulty taking a deep breath, and pressure. Naturally, I thought it would go away, and went back to sleep. Woke up again around 7:30, still in pain. I had breakfast, still hurting, and considered my options. i finally called the Visiting Nurses, who suggested I check with my oncologist's office. I called them and spoke with the nurse practitioner, who said it needed to be evaluated. Go to Peninsula emergency. Do not pass go, do not collect $200. I called Dory to see if she could take me--yes, of course. Once again, I got my toys together, left a message for Glenn, and waited for Dory. Once at emergency, I said the magic words, "chest pains," and was whisked into a room. Of course, there was no one in the waiting room this time. We were there till about 3:30, during which time they determined I did not have a heart attack and I did not have a blood clot. I did have an EKG, chest x-ray, CT scan, and many blood tests. I'm still uncomfortable, but I'm home. I have a doctor appointment for Monday. Tuesday I'll start chemo again. Dr. Chee didn't want to be whacking at my bone marrow until the infection in my legs was under control. It did throw off my schedule a bit. I should have had chemo on the 28th and the 6th. That way, the Ceili would be at the end of a chemo-free week. Guess I'll have to rely on adrenaline getting me through.
That's it, you are now up to date.
xxooxx
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