Tuesday, January 17, 2017

some good news, some less good

I have to fill in some gaps but I will do that soon. It is Tuesday Night and I have had a pretty good day so far. I got to sleep last night around 2:30, having forgotten to take my sleeping pill earlier. I woke about 7 and got my stationary biking in for 35 minutes then did some more cleaning around the house, drove down to the pasture and got the slightly good news that my kidney numbers and my blood level are slightly improved, responded to Craig’s request that he doesn’t want anything to do with Tracy’s response to me, and then I drove back and eventually went back to bed around 11:00 and slept really hard till 1:00 and took 45 minutes to get fully out of bed and to my wonderful cup of Starbucks coffee. After the coffee I dressed and walked down to the orchard. That was a bit of a struggle but I got up there, and the aerobics helped, and the rain held off. I checked my finances a little and made a couple of phone calls and then headed back. I tried to nap but I just rested and then then headed in to see have dinner at the Cinebowl and then see La La Land, a simply lovely movie that I thoroughly enjoyed. My kayak friend checked in and I wrote her a funny response. She is kind to check on me since she is so busy.

Monday, January 16, 2017

two decent days

This has been a pretty good two days although I can't get my Microsoft Work to work so I am doing my blog directly on Blogspot. Sunday was a good day, and I stayed in the hollow the whole day, practicing piano, light weights, yoga, cleaning the house and working a bit on the truck, taking a hike to the orchard (with a few stops to get my breath back) and watching both of the exciting football games. I wish Dallas would have won but Green Bay was fun to watch. Monday has also turned out to e a good day, my sleeping still way, way off but I did eventually get up in time to make it to lunch with Claire Hall and that turned out to be quite a nice lunch and walk. I went to my office to quickly get the sick leave form to Rosemary, chat with Laura and Amy, file some things and then still make it for blood work at 3:30. Dr. Pant called and he was just checking in but it was nice to hear from him and I thanked him profusely for getting me back quickly and into treatment. That probably is going to have a significant impact on my recovery. After bloodwork and an apple juice from Valerie, I went to have an early salad and sandwich at Panera, but since I couldn't get Microsoft Word to work, I decided to call East Coasters to see about the new bike parts, and when Matt offered to fix the rack, I headed over and got that done. I then thought a nice almond croissant and a cup of coffee would be nice so I headed over to Our Daily Bread and wrote my blog directly on Blogger. I got a very angry email from Tracy, after a kind one yesterday, calling me a "lying fucking prick" and I am not exactly sure why she is so angry with me. I talked with Craig earlier and explained things accurately and said I would enjoy playing golf with him at some point (nothing wrong with a very sick person wanting to go back to play golf when they can) and then Linda contacted Tracy and Tracy must have really misunderstood my situation. It is getting much too hard to live out in the hollow by myself and I am not sure how my treatment will go, and I would like Tracy to get her 20% when I sell the hollow. I guess she will never forgive me and I shouldn't have taken her kind words to heart. Oh well, my friends are being good to me and that has been very helpful.

Saturday, January 14, 2017

Back Home, and Doing Okay

On Friday I was released from the hospital even though my creatine numbers had gone up a little (from 2.6 to 2.71), all four doctors though that I was plateauing and that I could be released. My blood is still 5 pints low and my protein leakage is still high, but they expect those to start to charge within a few more weeks. The two biggest threats I have are from infections and stress, and I will do my best to avoid infected people (I have purchased a box of the masks) and not teaching and not overdoing anything right now should keep my stress down. I will probably go to my office occasionally (I would think almost always after 5 when few people should be around), and I have offered to share my office if needed. I started on a lot of strong drugs today Saturday (particularly 60 mg of prednisone and 4 pills per day of Cellcept) so I was very tired (I slept all night and then napped 7 hours during the day) but I did a little exercise (which the doctors said was fine) and I am feeling okay now. Rob says the prednisone will start keeping me up at night but he did prescribe a sleeping pill if needed. I will have more blood work on Monday and I see Dr. Trivedi on Friday so I should have some info on Tuesday and on Friday. I will have to be on drugs for at least six months and maybe much longer (I am also on 2 antibiotics) but Rob thinks I will be feeling much better in 6 weeks and Dr. Trivedi in 2 to 3 months, if I have no setbacks. I must say that getting out of the hospital yesterday was the best I have felt in 7 weeks, and I felt pretty positive about things, a good and tearful day. I did some exercising today, including almost 30 minutes of biking, a walk to my white pine, almost all my knee exercises, my yoga and I did some cleaning up in the house and in the truck. I drove into town about 5:30 and got some masks and then went to Macados for dinner, lumosity training and my blog. I feel okay and fairly positive, and my tears on my walk were certainly hopeful ones.

Friday, January 13, 2017

Friday in the Hospital with perhaps a chance to leave

Reflecting on my last journal, I decided to respond further with some more detail from my life, including being in charge of a psychiatric unit in my late 20s at South Beach Psychiatric Center. I was night coordinator and I was being trained by the psychiatrist as a covering therapist (my actual degree is in psychology), and the patients really liked me since I was very kind and often very na├»ve (Dr. Krisnamurti said that the patients often lied to me to get sympathy, or small favors, or cigarettes) but I didn’t care and they appreciated all the extra time I spent with them, often 10 hours or more a week. When I made my difficult decision to go for a master’s degree in English at Boston University, the unit offered to pay for my doctoral studies if I would agree to return to the unit. I was very proud of that offer and I still am. I wrote some of my best poems there and I think South Beach was one of my most valuable working experiences. Anyway, it is a little after 6 am and the phlebotomist was not able to draw blood from the spot the Nicky the nurse had chosen, so she will be back in 15 minutes to draw from a spot she has chosen. The first stick wasn’t too painful and the second stick at my elbow wasn’t too bad either. I hope my numbers are going down but If I have to stay a couple more days, it won’t be that bad. I am ready for breakfast and I told Nicky to tell the psych people that I need a specific time for them to visit or I will cancel it. Just waiting for them is not going to work for me since I like to walk so much and Claire Hall is coming for lunch and a walk. I would love to go on a bike ride soon and do all my exercises. Walking is a big help. I do think I have a deeper anxiety in my life and that has to be what to do with the hollow. I am pretty sure that if I make a pretty full recovery, then I will try to stay longer in the hollow. It has gotten harder to maintain with a recovering knee and just being 65, but I do think I still have a shot at staying there till 70, my original goal. I know all the benefits to living in an apartment closer to Blacksburg but it would be a real jolt right now, even though my present illness makes it more appealing. I think April or May will be the real moment of decision.

An Awful Night at Carilion

It is Wednesday and my first day in the hospital and I got my first dose of chemo (methoprednisone, 500 mg) and I had no real problems with anxiety or jitteriness. Rob thinks that will happen this evening or early morning so we will see. I had an awful morning since by the time they had admitted me and were ready to do the blood work, my valium had worn off and my lidocaine was losing its effect. Finally nurse Amanda got the IV in my right arm (looked better to her) and two minutes later a guy comes in and says he is going to draw blood and I say absolutely not and chase him away. I was not going to be stuck twice in a few minutes but fortunately Amanda was able to get the blood from the iv since I hadn’t had any chemo yet. I did later apologize for both of them and James the night nurse has promised to get me a 2 and ½ mg valium a half hour before tomorrow’s blood work. That should help a lot. I emailed back and forth with my kayak friend and she was wonderful, doing research which seemed to say that my treatment is the best one. Cathy Gallo is going to come visit tomorrow and she is one of the few people I would like to see. Claire was in touch and I may have her come visit in the afternoon as she offered to. Rob is much more optimistic than Dr. Pant and his call cheered me up quite a bit. He thought a vacation south would be a fine thing. Rosemary has also been very kind and she shared a lot about her own kidney experience. I also had a nice chat with Kelly and she was very supportive and that also had a very positive effect. I really do hope to get up to see her. I walked around the hospital quite a bit, probably a couple of miles but I got tired on my last walk a little after nine so I may not walk too much more. I did get my first dose of Cellecept and that hasn’t done anything bad yet. Wednesday continued to go well until about 11:30 pm when I was told that since my roommate had left, I was going to have another roommate. James the nurse said the new patient should be in fairly soon so I said I would stay up until they got him settled. No problem I thought figuring that this guy would go right to sleep. Unfortunately, the new patient didn’t get there until after one and after thy moved out his bed and completely woke me up and when they finally left about a half hour later, the new patient proved to be a problem. He left the light on and had the TV loud, and was coughing loudly and wanted a spit cup. Anyway, after a half hour, during which I read a little and put in my ineffective earplugs, I finally went out to tell James that this wasn’t going to work. He was not that helpful, still saying that I couldn’t get any valium for sleeping (as it turned out I did have a sleeping med order according to Dr. Pant and he was going to make sure it was available tonight). And so I sat in the lounge area, where they said I could use the fold out bed but I had no desire to sleep there since it didn’t look very clean and there were lights and noises. James was no help and eventually walked away from me and I cursed at him that this was fucking ridiculous (which I regretted and apologized later), but he also said, after I asked him if this was good medical care, he replied “Yes, I do” which was silly to say. I finally got a private room (which I didn’t ask for because I knew they were full) and that was such a relief and when the valium kicked in about 3:30 I finally fell asleep and slept till 8:10. I immediately called to talk to a supervisor and though they said one would be coming soon, Chelsea and Ellen didn’t show up until 10 o’clock and though I asked for a nurse to come a couple times, Amanda didn’t come until almost ten, so I had to give myself my morning meds. Chelsea and Ellen were very friendly and I think they saw my side but they are obviously working for the hospital so I think they will be balanced. I got my blood drawn and my second infusion so that was fine. Dr. Pant told me that my numbers had gone up (2.1 to 2.6 but he mentioned that the numbers might need a new more days to go down (something Rob mentioned, that my numbers might go up to 3.0 before going down). Then Claire and I had lunch and took a long walk around the hospital and that felt so good. Dr. Belcher came and asked me about what he should do if I have a heart attack and I agree with him he should try to resuscitate me. Then if asked if I wouldn’t mind seeing a psychiatrist because he thought I had a deeper anxiety (not sure about that) but since I just found out that I have lupus nefritis and that my numbers are still going up and he asked me what to do about a heart attack, shouldn’t I be very anxious. I absolutely think so but I told him I would be glad to talk to someone because certainly during my drive home from my failed Texas vacation, my fear of the pain of the renal biopsy (which was supposed to be from 4 to 10 but ended up about a 2), my anxiety about the results from UVa (which took 8 days to get and were not very good), and my increasing numbers seem to me enough to get anyone on earth pretty anxiety and last night’s unprofessional treatment of me also contributed to my being upset and more anxious. I just want this on record. I understand some of the staff may see things differently but since I am an award winning investigative reporter with over 350 publications and several books out, I think I do a very good job of presenting the truth. If any of the staff want to respond to this, feel free to share it and I will be glad to read their responses and offer counter responses. Let me make it clear that almost everyone has treated me well and the three people who I has problems with I apologized to. I want to single out Abby, Nicole and Amanda.

Monday, January 9, 2017

still no definitive news

It is Monday evening and I am waiting for a call from Rob. It may not answer what I have but it should clarify things a little. I should absolutely know what I have by tomorrow when the results of the renal biopsy are due. I hope it is not lupus, or at least that it is the easier to treat kind. I called Dr. Trividi but she didn’t return my call yet. I did get a low pressure shower head and I picked up some needed supplies. I had a cup of onion soup and a baguette at Panera, where I have finished my lumosity training and am working on my blog. I did my knee exercises, my weights and yoga, rode the stationary bike and I practiced all my piano pieces. My blood is 4 pints low and that has Rob worried. I talked with Rosemary and she did not offer to take away another course but that may happen when I get the final diagnosis. I talked to Gyorgyi and she is on the way back home, still recovering from her bad cold. I am going to have a salad when I watch the National Championship game. It was still too cold to go for a walk, but tomorrow should be warmer and I hope to go for a stroll tomorrow. Cathy is doing better but teaching is a real struggle, particularly since she can’t eat anything all day.

Sunday, January 8, 2017

a snow day in the hollow and getting out today

It is Sunday and I am in Greens watching the Packers / Giants game. It was brutal out last night and this morning but I stayed at the house yesterday, clearing the road and taking a 25 minute hike toward the afternoon. I did some straightening out around the house and my yoga and my knee exercises along with 40 minutes of bike riding. I also practiced almost all my pieces. This morning was just too cold to even go out. I did my yoga, knee exercises and for the first time since the biopsy, my weights. I rode the bike for 40 minutes and practiced all my pieces. I also kept straightening out the house, even sweeping the floors. I read the Toyota book and figured out how to get into 4 wheel drive low, which may come in handy. Tomorrow I may know all the results and I am scared but not panicked. I tried to call Gyorgyi but her box was full so I’m not sure if she got home yet.