I was told during my visit to the clinic last Tuesday that they would be open until 2:00 PM on Memorial Day and I should plan to come at my usual time. I was at the clinic on the 22nd because we had gone to Kanarraville to see the "ring of fire" eclipse and spent the night in Cedar City before driving home on Monday. The eclipse was spectacular and we were glad that we had gone to the trouble of traveling to see it. We had found a good place on the east side of Kanarraville where we could park in the shade (after paying $10.00 to park in a "city" parking lot) and I had room to set up the camera on a tripod and had a chair to sit in. We had the special viewing glasses and I had taped the glass from my welder's mask to the front of my longest range lens for picture taking. The viewing was spectacular; the pictures less so. I downloaded them into my PhotoShops Elements7 program when we got home, but when I selected the pictures that I wanted to edit the program locked them and I could not get into the EDIT part of the program to do anything with them. I printed one to take to the clinic the next day where there were lots of patients and I had waits for all the procedures including at the pharmacy.
Today's visit should have been short and the traffic was light, but Oliver, my nurse for the day, drew 2 vials of blood, which doesn't usually happen on day 8 of a cycle, and I had to wait for results to be reported before he would, or could, give me a Velcade shot. I didn't leave the clinic until 11:25, but did not have to wait at the pharmacy. And I may not wait there many times in the future because Humana's mail source pharmacy (RightSourceRX) has obtained prescriptions from Dr. Zangari for 5 of my maintenance drugs and last Friday sent me 3-month supplies for them. Some of these the Huntsman pharmacy will ocassionally refuse to fill because they tell me that Humana will not autherise refilling them more than 5 days before my 30-day prescription schedule calls for refilling. I am perplexed.
Monday, May 28, 2012
Thursday, May 17, 2012
Quarterly visit with Dr. Zangari
Emma accompanied me to the appointment with Dr. Zangari today. We were asked to come 30 minutes early and almost succeeded in doing so arriving perhaps 2 or 3 minutes late. I had expected a detailed examination by the doctor, but it was suprisingly cursory. He listened to me breathe while I was seated in a side chair, did not listen to my heart or check my belly for lumps or soreness and did not have me lie on the examination table where he might have checked my reflexes as Dr. Tricot always did. He asked a few questions about my general health and inasmuch as I have had no problems or issues since the Thalidomide was discontinued there was nothing to discuss. He said he would see me after 2 more cycles, but he did say that prior to the next visit I will have a bone marrow biopsy and a scan, neither of which were done this time. He did not say why he is having me come see him after 2 cycles instead of 3 as it has always been, but Malene did tell me on Monday that I may be taken off chemo for some months and said how many, but I did not catch how soon that might happen. I should have gone in the Infusion Room to ask her to be more specific, but we were anxious to get to the pharmacy and then home.
Next Monday will be day-one of the next cycle, but I will not go to the clinic until Tuesday because we are going to southern Utah on Sunday to see the "ring of fire" eclipse of the sun and will spend the night in Cedar City so would not get back in time for a clinic visit Monday morning. I picked up Cyclophosphamide at the pharmacy today and will take some Monday to stay on the day-one and day-15 schedule. Dr. Zangari said I should stay on the same drugs and frequency until he sees me again and confirmed that I need not take the Thalidomide. My myeloma markers hare remained steady and they will continue to be determined on the first day of each cycle, except the blood work done on Monday will suffice for the next cycle.
We saw Gail Jones in the hallway and I asked if she had heard from the 2 doctors that are coming for another interview and she said it will not be until sometime next month. She did remind me that both of them are bringing their families for the forthcoming visit and she crossed her fingers.
Next Monday will be day-one of the next cycle, but I will not go to the clinic until Tuesday because we are going to southern Utah on Sunday to see the "ring of fire" eclipse of the sun and will spend the night in Cedar City so would not get back in time for a clinic visit Monday morning. I picked up Cyclophosphamide at the pharmacy today and will take some Monday to stay on the day-one and day-15 schedule. Dr. Zangari said I should stay on the same drugs and frequency until he sees me again and confirmed that I need not take the Thalidomide. My myeloma markers hare remained steady and they will continue to be determined on the first day of each cycle, except the blood work done on Monday will suffice for the next cycle.
We saw Gail Jones in the hallway and I asked if she had heard from the 2 doctors that are coming for another interview and she said it will not be until sometime next month. She did remind me that both of them are bringing their families for the forthcoming visit and she crossed her fingers.
Monday, May 14, 2012
I hate Google Chrome
I spent quite a bit of time earlier today writing a post to my blog about a long day at the Huntsman BMT and then I clicked on Preview and could not get back to the post. I tried clicking on Publish under the comment box and because I had not written a comment on my blog I could not publish. Perhaps I should have clicked on the edit pencil, but the post did not need editing. If I needed to edit anyway there should be notice on the screen as to how to get back to the post, without clicking on sign-out as I did and so lost the post. If I had any idea this would have happened I would have printed my post so that I could recreate it easily. I repeat I hate Google Chrome and wish that I could go back to my blogger prior to Chrome.
The post that I wrote, more-or-less goes like this: I arrived at the clinic right on time at 10:00 AM and waited in the registration area more than 30 minutes before Marty took me back for my weight and height and then took me to the Infusion Room where I had to sit on a side chair or lie on a bed as she found the supplies and then installed a line in my port. Malene took over to complete my vitals and while she was doing so Laurie cleaned a reclining chair nearby and invited me to move to it, which is much more comfortable for the long wait for the Velcade shot and the Aredia infusion, both of which combined for about four and a half hours.
Today was day 21 of week three of the current 4-week maintenance cycle and the procedures for this week are completely different from those of all previous 4-week maintenance cycles. I delivered a 24-hour urine collection this morning, more blood was drawn than usual in week 3, no bone marrow biopsy was taken, no scans have been scheduled, and I see Dr. Zangari Thursday whereas in the past I saw Dr. Tricot or Dr. Zangari one or two days into week one of the next cycle. I have asked repeatedly why the schedule is so different now without getting any reasonable answer. I asked again today and was told that Dr. Zangari is very busy and has scheduled some tests and visits earlier in an attempt to catch up. I believe this to be true because he is seeing a double load of patients because the Hospital still has not hired a replacement doctor for Dr. Tricot. I asked Gail Jones, head nurse, about the search for a replacement today and she told me that 2 doctors are soon coming for second interviews and both are bringing their families, which may mean that they are serious about accepting the Hospitals offer. Perhaps both will be hired inasmuch as Dr. Tricot told me that he expects Dr. Zangari to follow him to Iowa City after a replacement is found.
The post that I wrote, more-or-less goes like this: I arrived at the clinic right on time at 10:00 AM and waited in the registration area more than 30 minutes before Marty took me back for my weight and height and then took me to the Infusion Room where I had to sit on a side chair or lie on a bed as she found the supplies and then installed a line in my port. Malene took over to complete my vitals and while she was doing so Laurie cleaned a reclining chair nearby and invited me to move to it, which is much more comfortable for the long wait for the Velcade shot and the Aredia infusion, both of which combined for about four and a half hours.
Today was day 21 of week three of the current 4-week maintenance cycle and the procedures for this week are completely different from those of all previous 4-week maintenance cycles. I delivered a 24-hour urine collection this morning, more blood was drawn than usual in week 3, no bone marrow biopsy was taken, no scans have been scheduled, and I see Dr. Zangari Thursday whereas in the past I saw Dr. Tricot or Dr. Zangari one or two days into week one of the next cycle. I have asked repeatedly why the schedule is so different now without getting any reasonable answer. I asked again today and was told that Dr. Zangari is very busy and has scheduled some tests and visits earlier in an attempt to catch up. I believe this to be true because he is seeing a double load of patients because the Hospital still has not hired a replacement doctor for Dr. Tricot. I asked Gail Jones, head nurse, about the search for a replacement today and she told me that 2 doctors are soon coming for second interviews and both are bringing their families, which may mean that they are serious about accepting the Hospitals offer. Perhaps both will be hired inasmuch as Dr. Tricot told me that he expects Dr. Zangari to follow him to Iowa City after a replacement is found.
Wednesday, May 2, 2012
I am considering terminating blog because of problems converting to Google-Chrome
It has been very frustrating trying to post to my blog because Google told me that my browser is no longer supported by Blogger and teld me that I should convert to Google Chrome, which I tried Friday and again Monday and it has taken the last 2 days, and I am not sure that this Post will be added to my Blog.
I started to write a Post last Friday, because of a frustrating 4 days trying to connect with someone at the Huntsman BMT clinic who could tell whether I needed to resume taking Thalidomide, which decision depends on the Myeloma markers as determined by bloodwork once every 4 weeks. That blood was drawn April 23, but the markers aren't reported until the next day. All day long Tuesday I expected a call from the PA on duty, Amanda, to whom I had explained my need for this information, but that call did not come. So I called the clinic on Wednesday and again waited all day for my call to be returned and went through this again Thursday after having been more explicit about what I needed, and wanted. Finally on Friday I was called, not once but twice with word that the Myeloma markers had remained flat and that I could refrain from taking the Thalidomide until the next time the markers will be determined, which will be May 14.
I requested a copy of the report on the April 23 bloodwork when I was at the clinic Monday and could confirm for my own peace of mind that the Kappa Qnt Free Light Chains were at 4.42 mg/dcl followed by an H (which always appears). I much prefer not to resume taking Thalidomide because the neuropathy in my fingers and feet (largely responsible for my balance problems) is very much reduced. If I were to plot these values over the last 2 years much as I did on the plot shown on the June 21, 2010, Post the line would be horizontal unless I exaggerated the vertical scale. Dr. Tricot told us early on, in response to a question by Nancy that the markers will not go to zero, but he would like tham to go below 1 mg/dcl. They have never been below 3 mg/dcl and I see no evidence that my cancer will ever be declared in remission, which may mean that I will be going to the BMT clinic once a week forever.
Emma tries to make it to the Cottonwood Heights Rec Center at least 3 times, and sometimes 5, a week for aquasize classes, which sometimes means getting up at 7:00 AM. No problem for me on Mondays because I get up at that time to go to the clinic, but sometimes on Wednesday or Friday I might prefer to sleep in. The class on the other 2 days is later and we can stay up later the night before. She always feels better after class and after socializing with some of the other ladies. Both ankles stiffen on occasion, especially after sitting for long, and she continues to take medication for the blistering near the incision on her leg and hasn't had any recurrence.
I started to write a Post last Friday, because of a frustrating 4 days trying to connect with someone at the Huntsman BMT clinic who could tell whether I needed to resume taking Thalidomide, which decision depends on the Myeloma markers as determined by bloodwork once every 4 weeks. That blood was drawn April 23, but the markers aren't reported until the next day. All day long Tuesday I expected a call from the PA on duty, Amanda, to whom I had explained my need for this information, but that call did not come. So I called the clinic on Wednesday and again waited all day for my call to be returned and went through this again Thursday after having been more explicit about what I needed, and wanted. Finally on Friday I was called, not once but twice with word that the Myeloma markers had remained flat and that I could refrain from taking the Thalidomide until the next time the markers will be determined, which will be May 14.
I requested a copy of the report on the April 23 bloodwork when I was at the clinic Monday and could confirm for my own peace of mind that the Kappa Qnt Free Light Chains were at 4.42 mg/dcl followed by an H (which always appears). I much prefer not to resume taking Thalidomide because the neuropathy in my fingers and feet (largely responsible for my balance problems) is very much reduced. If I were to plot these values over the last 2 years much as I did on the plot shown on the June 21, 2010, Post the line would be horizontal unless I exaggerated the vertical scale. Dr. Tricot told us early on, in response to a question by Nancy that the markers will not go to zero, but he would like tham to go below 1 mg/dcl. They have never been below 3 mg/dcl and I see no evidence that my cancer will ever be declared in remission, which may mean that I will be going to the BMT clinic once a week forever.
Emma tries to make it to the Cottonwood Heights Rec Center at least 3 times, and sometimes 5, a week for aquasize classes, which sometimes means getting up at 7:00 AM. No problem for me on Mondays because I get up at that time to go to the clinic, but sometimes on Wednesday or Friday I might prefer to sleep in. The class on the other 2 days is later and we can stay up later the night before. She always feels better after class and after socializing with some of the other ladies. Both ankles stiffen on occasion, especially after sitting for long, and she continues to take medication for the blistering near the incision on her leg and hasn't had any recurrence.
Monday, April 16, 2012
Very fast service at the BMT clinic this week
My visit to the BMT clinic this morning was the shortest one I have ever had; partly because I did not have any prescriptions to be refilled. I got into the registration desk about 5 minutes to 10:00 and was taken out for weighing in a few minutes. The rest of the vitals were taken in the Infusion Room where I was the first patient and had my choice of chairs. Oliver installed the line in my port and Alina was soon ready to give me the infusion of Velcade. I was backing out of my parking space at 10:30. The visit a week ago also was short, but I had 5 prescriptions to be refilled and had a wait at the pharmacy so I didn't leave nearly as fast.
I didn't discover until I got home that when I accidentally dropped my cell phone in the parking garage this morning the back had come off. The phone landed right side up and I immediately checked to see whether it would still function, which it would, and I had no occasion to use it until I was home and discovered the loss. Emma thinks I should go to Verizon and get a new phone, but they will start another 2-year abligation period if I do that. My inclination is to drive back up to the hospital to see if I can find the back or possibly find that it has been found and turned in to Lost & Found.
Emma's ankle was quite painful last night when we were ready to go up to bed. We had sat on the couch for more than 2 hours watching a movie and then finished by watching the late news and she had not used her legs for more than 2 and a half hours. I should remind her to get up once in awhile, but I neglected to do so last night.
I didn't discover until I got home that when I accidentally dropped my cell phone in the parking garage this morning the back had come off. The phone landed right side up and I immediately checked to see whether it would still function, which it would, and I had no occasion to use it until I was home and discovered the loss. Emma thinks I should go to Verizon and get a new phone, but they will start another 2-year abligation period if I do that. My inclination is to drive back up to the hospital to see if I can find the back or possibly find that it has been found and turned in to Lost & Found.
Emma's ankle was quite painful last night when we were ready to go up to bed. We had sat on the couch for more than 2 hours watching a movie and then finished by watching the late news and she had not used her legs for more than 2 and a half hours. I should remind her to get up once in awhile, but I neglected to do so last night.
Monday, April 2, 2012
Another week Thalidomide free
Abby, PA, called me last Tuesday to tell me that the bloodwork from the March 26 draw showed that my Myeloma markers had stayed more or less flat and she had talked to Dr. Zangari and he said that I could skip taking Thalidomide until she sees me next Monday. She was not at the clinic this morning so I asked my nurse, Kristin, to find out whether I needed to resume taking the Thalidomide and also to determine whether Elliott Rudisill was in the clinic. He had e-mailed me a schedule for tests in May that had not listed some sort of scan, either a MRI or a PET/CT, scan one of which I have had at the end of every 3 cycles prior to seeing Dr. Tricot or now Dr. Zangari. I wondered if this omission was a mistake or if it might portend some significant change in my treatment, but there was nobody there for me to talk to. She did say that Derek, my patient coordinator would be informed and I can expect a call from him.
I am quite pleased that I do not need to take Thalidomide for another week, or perhaps even more. The neuropathy in my fingers and feet is much reduced; it is still quite noticeable with a tingling sensation especially in my fingers, but the effects on my balance are largely gone. I walked around the block this morning without bothering to take the walking sticks and felt no need for them at all. (Emma hadn't gotten up until after I returned and she doesn't yet know that I went without them.)
Two vials of blood were drawn this morning and Kristin insisted on waiting for the bloodwork to be reported before giving me the Velcade shot. I had her print out today's result and those from last week so that I could have the Myeloma marker results. Kristin said that my bloodwork looks good, but it is hard for me to make meaningful comparisons from one week to the next and I just have to accept whtever I am told about the blood.
Emma enjoyed her birthday. Nobody ever forgets it and this year she celebrated it a week early and then again yesterday when we had another couple and Grandaughter Laura here for dinner. Perhaps a bit too much work for her because she will not accept much help.
I am quite pleased that I do not need to take Thalidomide for another week, or perhaps even more. The neuropathy in my fingers and feet is much reduced; it is still quite noticeable with a tingling sensation especially in my fingers, but the effects on my balance are largely gone. I walked around the block this morning without bothering to take the walking sticks and felt no need for them at all. (Emma hadn't gotten up until after I returned and she doesn't yet know that I went without them.)
Two vials of blood were drawn this morning and Kristin insisted on waiting for the bloodwork to be reported before giving me the Velcade shot. I had her print out today's result and those from last week so that I could have the Myeloma marker results. Kristin said that my bloodwork looks good, but it is hard for me to make meaningful comparisons from one week to the next and I just have to accept whtever I am told about the blood.
Emma enjoyed her birthday. Nobody ever forgets it and this year she celebrated it a week early and then again yesterday when we had another couple and Grandaughter Laura here for dinner. Perhaps a bit too much work for her because she will not accept much help.
Monday, March 26, 2012
No news on Thalidomide use
Today is the day I expected to learn whether I will resume taking Thalidomide or whether I can stay off it for longer. But I had forgotten that when the bloodwork includes determinations of the Myeloma markers they are not reported for another day or two. Abby reminded me of this delay today, but said she will get the report Wednesday on the blood collected today and she will talk to Dr. Zangari about my status with respect to the Thalidomide and will then give me a call to let me know whether I should resume taking it. The neuropathy is even more reduced in my feet (and fingers) and I no longer have a balance problem; I can put my trousers on while standing and feel no need for assistance in going up and down stairs. I carry the walking sticks that Emma gave me for Christmas when I take my morning walk around the block, but unless there is snow on the walks I only carry and do not use them.
The time spent in the BMT clinic last week was the shortest that I can remember and did not justify a post to the blog. I did wait a bit at the pharmacy and waited again today after another short stay in the clinic even though Abby had sent them new prescriptions for all 3 needed refills. The charges for the drugs seem very high perhaps because I have had the Thalidomide prescription refilled only once this calendar year so that that huge charge, which usually propels me right through the "donut hole," early in the year has only been paid once.
Emma was subjected to an early birthday dinner yesterday because Nancy and all her family except Laura will be out of town next Sunday on her actual birthday. Both of her granddaughters told her that she looked quite good and quite thin, which surprised her a bit. Laura insists that she will take us out to brunch as her gift to Grandma next Sunday and we are to choose the place. Nancy's gift to Emma was tickets for both of us (and herself) to the gymnastic meet Friday at the Huntsman Center where the University of Utah hosted the Pac-12 conference championship. We were disappointed that the U. of U. team came in second after the UCLA team by a few percentage points because they had to count one of their 2 falls from the balance beam.
The time spent in the BMT clinic last week was the shortest that I can remember and did not justify a post to the blog. I did wait a bit at the pharmacy and waited again today after another short stay in the clinic even though Abby had sent them new prescriptions for all 3 needed refills. The charges for the drugs seem very high perhaps because I have had the Thalidomide prescription refilled only once this calendar year so that that huge charge, which usually propels me right through the "donut hole," early in the year has only been paid once.
Emma was subjected to an early birthday dinner yesterday because Nancy and all her family except Laura will be out of town next Sunday on her actual birthday. Both of her granddaughters told her that she looked quite good and quite thin, which surprised her a bit. Laura insists that she will take us out to brunch as her gift to Grandma next Sunday and we are to choose the place. Nancy's gift to Emma was tickets for both of us (and herself) to the gymnastic meet Friday at the Huntsman Center where the University of Utah hosted the Pac-12 conference championship. We were disappointed that the U. of U. team came in second after the UCLA team by a few percentage points because they had to count one of their 2 falls from the balance beam.
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