Well, evidently my immune system has decided to celebrate the end of the leukemia by getting a virus. I feel lousy, have a slight elevation in temperature and am taking to my bed. I am sure that my labs are goofed up again and probably will be for several more weeks, but I do not have to check them again until April. Thankfully, I got them done during the few day hiatus between the Christmas virus and the Spring virus.
Wishing you the ability to avoid this virus and me a good night's sleep.
P.S. I have my port removal appointment.
Showing posts with label VAD. Show all posts
Showing posts with label VAD. Show all posts
Thursday, February 28, 2013
Sunday, September 9, 2012
Day 85 - a perfectly ordinary little gem
After Tommie left, Ellie and I were errand central, including the grocery store for birthday cake supplies. I worked a little on warping my loom and, hurray! my VAD site is healing well enough that I can warp the loom without pain. I was afraid that it was going to be permanent, but, no, catastrophizing wizard, it is not permanent and you can weave again. I paid Matt, my favorite farmer, two visits today. The first visit was for, I thought, everything I needed from him and the second visit was for strawberries (which Ellie requested I buy so she could dip them in the left over birthday cake frosting) and to give Matt the $2 which he let me owe him when I didn't have enough money on the first trip. It was as I was driving home, eating a few of the strawberries, that I realized today was actually a really nice day. I completely missed out on strawberries this year (berries are totally off the neutropenic diet because there is really no way to clean their lumpy little surfaces very well) and then Matt had these beautiful, absolutely perfect tasting strawberries that I got to eat some of today at the end of the summer when strawberries are not usually so good. Perhaps because the strawberries were so unexpectedly perfect, I was jolted out of myself for a second into, "Wow, what a perfect day this is." I decided to stay there.
Ellie and I made her cake and she spent a lot of time playing with these keepsake figurines that she has decided she wants to start collecting. They are not intended to be toys, but she had a lot of fun making them sing and dance and act out stories. She had Terry bring home the tripod and did a stop action film of them. She spent about thirty minutes re-arranging the knick-knacks on a shelf so that there was space for the new figurines, all the while singing a song about the knick-knacks she was organizing, "we're the chickens and my legs are broken, broken, bro-o-o-o-ken," etc. while I was in the next room discovering that I could still weave. Soon after I took the dog for a 2.5 mile walk in PEA where she was the fabulously good dog she always is, hurling her furry self into the river over and over with such joy, greeting other dogs briefly and politely and coming when I call her. It is a real pleasure to have a well behaved dog (thank you, Emily). On top of that, it's always the best day of Maggie's life and that makes her so much fun to be around.
One of the (ok, The only) good thing about the neutropenic diet is that I have had to learn to cook a bit more. I really like salmon which when well cooked is ok for people without immune systems and discovered (after Emily suggested it), that you can cook salmon on the grill wrapped in foil. This solves two problems: cooking fish in the house makes the house smell and there is really no way to make the grill sanitary enough for a neutropenic person. I noticed that there is a lot of salmon juice and fat left over in the foil and wondered what would happen if you stuck potatoes under the fish, wrapped it up and cooked it. The answer: magic. It was so delicious. The only problem was that the crunchy part of the potatoes stuck to the foil, but I bet if I make it a lot and experiment, I can solve this problem. I am resolved to try!
My VAD is getting better. Picture below the jump which I note sometimes works and sometimes doesn't. If you don't want to see it (warning: no blood, but a surgical wound and bruising) and it doesn't hide the picture behind a jump for you, I am sorry. Let me know if it bothers you and I'll find a different solution that is more reliable.
I had a perfect day made out of lots of little sweet pieces. I hope for a sweet piece or two for each of us tomorrow.
Saturday, September 8, 2012
Day 84 - Fox Point Five Miles
This morning Terry and I visited Beach Pea and his studio. The kiln had been fired yesterday and was still over 200 degrees. We hung out for a while, drank coffee and headed home. Around lunchtime, Tommie arrived from the cape and I invited Kate over for a study break. She proved to be both Maggie and Kita's favorite person ever, but they left her alone long enough to eat lunch with us.
Tommie and my next activity was to take Ellie to every shoe shop in the SeaCoast looking for the ideal birthday boots for an eleven year old. We finally found them at the closest shoe shop to our house, Bootleggers, which we had not even considered until we were desperate. Next year, we'll start there. The good news is that I was able to get chocolate in Portsmouth from where else? to take up for the nurses at the end of the week when I do chemojail.
For our capstone of the day, Tommie and I did the Fox Point 5 mile road race. It is a beautiful and very fun race in Newington which we walked. Our pace was about 16 and a half minute miles, but that is ok when I think about a hemoglobin of 10.5 and a VAD two days ago. I am a little tired now, but not badly. I think I may be a bit stiff in the morning, but that is why they make tylenol. Fox Point is one of the nicest of the Sea Coast Road Race Series races and the first year was for sure my favorite. Now, it's tied with the Market Day Race for my favorite.
If you are a runner or walker at all, consider doing the Road Race Series. It's good fun and keeps one motivated through the whole summer. I have gotten two jackets in previous years and loved wearing them, but this one (which I am on target to get), will be very special. The next races are both 5K's and the first one in early October should be at a time when I'm feeling fairly decent, but I'm a little worried about the second one which will be a few days after likely chemo jail #3. However, it's only 5K and there is no rule against using a wheelchair so Tommie says she'll push me if need be. Also, the worst time is not the first few days I'm home, but a few days after that. We'll see. I may need to be wheeled to my jacket.
For those of you who read every day, you may remember that I wanted to talk a little bit about bone marrow biopsies (BMB). I have now had four, two of which were painful and two of which were not. Even the ones without pain were uncomfortable and unpleasant, but they completely lacked the electric, roving, must-be-attended-to feeling that the ones with pain featured. The difference (I've been told) is the speed that things are put into and taken out of the marrow space. Evidently it does not like its pressure changed one bit. Of course, no one wants to gratuitously hurt their patient, so you would think that everybody would be really excited to learn which steps need to be done slowly to avoid pain. You might think that slowly the non-painful type of BMB would take over and replace the painful BMB as people noticed how much nicer it was for patients to miss out on the special pain of a BMB. You'd think wrong.
I have a clinic patient who has probably had two dozen BMBs (treated in Boston). She tells me that they all hurt and that they are mostly done by trainees. Now that I have learned that a BMB does not have to hurt, I cannot believe that she has been subjected to that sensation over and over and over again, every time gratuitous. I am not sure why the better innovation has not spread; that it takes more time seems possible, but really five minutes on a thirty minute procedure? Give me a break. It is possible that those who are doing more painful BMBs don't know that there is a better way. I would believe this if it was only older docs whose BMBs were painful, but my patient's and my experience with painful fellow BMBs makes this more doubtful. Or, if it is the case, why don't they know? Why has an innovation (evidently) that makes a painful procedure merely unpleasant not widely known about? Can it be that the people doing BMBs care so little for patient comfort that they have not noticed? Certainly, if anyone does a BMB on me that is painful again, they will be educated fully on the importance of not changing the pressure in the marrow space quickly. Maybe other patients just figure that some marrows hurt and some don't and there's nothing the practitioner can do to make it better? When they mention to the person whose marrow hurt that it hurt, everyone thinks it's the luck of the draw so there is nothing to be learned here. It's all very discouraging. Not only do I not want pain with BMBs, I want painful BMBs to stop for everyone. (disclaimer: when I say I had two BMBs without pain, I really mean NO pain. I'm sure it's not completely possible, even with perfect technique to always do painless BMBs, but I am equally sure that it is possible with better technique to do far more painless BMBs. Also, the unpleasant part, the lidocaine injections, don't have a painless replacement at this point.)
The "why do people use less than perfect technique for BMBs and cause unnecessary pain" question is reminiscent of why do people neglect to wash their hands and cause unnecessary infections question. I think health care facilities have done a remarkable job at changing the culture around hand washing and we're in the midst of a culture change about treating pain. Next, perhaps, a culture change about causing pain.
I wish I understood why a simple change to a procedure that eliminates its pain is not more widespread. I hope I can figure out why and help it spread further. Even better, I hope it gets spread more widely, quickly. I hope the innovations that would make your life easier are known to you or revealed soon.
Tommie and my next activity was to take Ellie to every shoe shop in the SeaCoast looking for the ideal birthday boots for an eleven year old. We finally found them at the closest shoe shop to our house, Bootleggers, which we had not even considered until we were desperate. Next year, we'll start there. The good news is that I was able to get chocolate in Portsmouth from where else? to take up for the nurses at the end of the week when I do chemojail.
For our capstone of the day, Tommie and I did the Fox Point 5 mile road race. It is a beautiful and very fun race in Newington which we walked. Our pace was about 16 and a half minute miles, but that is ok when I think about a hemoglobin of 10.5 and a VAD two days ago. I am a little tired now, but not badly. I think I may be a bit stiff in the morning, but that is why they make tylenol. Fox Point is one of the nicest of the Sea Coast Road Race Series races and the first year was for sure my favorite. Now, it's tied with the Market Day Race for my favorite.
If you are a runner or walker at all, consider doing the Road Race Series. It's good fun and keeps one motivated through the whole summer. I have gotten two jackets in previous years and loved wearing them, but this one (which I am on target to get), will be very special. The next races are both 5K's and the first one in early October should be at a time when I'm feeling fairly decent, but I'm a little worried about the second one which will be a few days after likely chemo jail #3. However, it's only 5K and there is no rule against using a wheelchair so Tommie says she'll push me if need be. Also, the worst time is not the first few days I'm home, but a few days after that. We'll see. I may need to be wheeled to my jacket.
For those of you who read every day, you may remember that I wanted to talk a little bit about bone marrow biopsies (BMB). I have now had four, two of which were painful and two of which were not. Even the ones without pain were uncomfortable and unpleasant, but they completely lacked the electric, roving, must-be-attended-to feeling that the ones with pain featured. The difference (I've been told) is the speed that things are put into and taken out of the marrow space. Evidently it does not like its pressure changed one bit. Of course, no one wants to gratuitously hurt their patient, so you would think that everybody would be really excited to learn which steps need to be done slowly to avoid pain. You might think that slowly the non-painful type of BMB would take over and replace the painful BMB as people noticed how much nicer it was for patients to miss out on the special pain of a BMB. You'd think wrong.
I have a clinic patient who has probably had two dozen BMBs (treated in Boston). She tells me that they all hurt and that they are mostly done by trainees. Now that I have learned that a BMB does not have to hurt, I cannot believe that she has been subjected to that sensation over and over and over again, every time gratuitous. I am not sure why the better innovation has not spread; that it takes more time seems possible, but really five minutes on a thirty minute procedure? Give me a break. It is possible that those who are doing more painful BMBs don't know that there is a better way. I would believe this if it was only older docs whose BMBs were painful, but my patient's and my experience with painful fellow BMBs makes this more doubtful. Or, if it is the case, why don't they know? Why has an innovation (evidently) that makes a painful procedure merely unpleasant not widely known about? Can it be that the people doing BMBs care so little for patient comfort that they have not noticed? Certainly, if anyone does a BMB on me that is painful again, they will be educated fully on the importance of not changing the pressure in the marrow space quickly. Maybe other patients just figure that some marrows hurt and some don't and there's nothing the practitioner can do to make it better? When they mention to the person whose marrow hurt that it hurt, everyone thinks it's the luck of the draw so there is nothing to be learned here. It's all very discouraging. Not only do I not want pain with BMBs, I want painful BMBs to stop for everyone. (disclaimer: when I say I had two BMBs without pain, I really mean NO pain. I'm sure it's not completely possible, even with perfect technique to always do painless BMBs, but I am equally sure that it is possible with better technique to do far more painless BMBs. Also, the unpleasant part, the lidocaine injections, don't have a painless replacement at this point.)
The "why do people use less than perfect technique for BMBs and cause unnecessary pain" question is reminiscent of why do people neglect to wash their hands and cause unnecessary infections question. I think health care facilities have done a remarkable job at changing the culture around hand washing and we're in the midst of a culture change about treating pain. Next, perhaps, a culture change about causing pain.
I wish I understood why a simple change to a procedure that eliminates its pain is not more widespread. I hope I can figure out why and help it spread further. Even better, I hope it gets spread more widely, quickly. I hope the innovations that would make your life easier are known to you or revealed soon.
Friday, September 7, 2012
Day 83 - normal ordinariness with a side of VAD
Not much news to be had today here.
My VAD site did not wake me all night. I did not need to fill my pain killer prescription. I woke about five minutes before my alarm went off and was pretty excited to take a tylenol. I spent most of the day with an ice pack on the site and it is not too swollen now. I'm actually very glad that it will get a chance to heal before I need to use it next week. It's swollen and tender and the last thing I would want is a needle into the middle of it infusing poison. Also, the bone marrow biopsy sites that happened right before or right after chemo took longer to heal and gave me bigger scars. Having a smaller scar on my neck will be a plus. A lot of people get their VADs implanted and come back from the OR with it accessed, ready to go. I'm glad mine is getting to heal first.
Other news from today is that I went out to lunch with Diane which was lots of fun. We went to the Loaf and Ladle and I had another bowl of that delicious fish chowder which is still highly recommended by me. It was so nice to see her and Friday is not a usual day off for Diane so it was a special treat.
I wound a nice warp this morning and started to put it on the loom and then I discovered that the back and forth movement right at chest level that one does when one warps a loom really sets off every single little bit of the VAD wounds. Drat!
I came close to caught up on my journals today and the August 30 NEJM has a great clinico-pathological case conference if you are into medicine. It's a great story, too and I won't say anything more than that.
I think it's bed time for me. Below the fold is today's VAD picture.
We all have wounds, surgical or not. I hope you are able to heal well. Me, too.
My VAD site did not wake me all night. I did not need to fill my pain killer prescription. I woke about five minutes before my alarm went off and was pretty excited to take a tylenol. I spent most of the day with an ice pack on the site and it is not too swollen now. I'm actually very glad that it will get a chance to heal before I need to use it next week. It's swollen and tender and the last thing I would want is a needle into the middle of it infusing poison. Also, the bone marrow biopsy sites that happened right before or right after chemo took longer to heal and gave me bigger scars. Having a smaller scar on my neck will be a plus. A lot of people get their VADs implanted and come back from the OR with it accessed, ready to go. I'm glad mine is getting to heal first.
Other news from today is that I went out to lunch with Diane which was lots of fun. We went to the Loaf and Ladle and I had another bowl of that delicious fish chowder which is still highly recommended by me. It was so nice to see her and Friday is not a usual day off for Diane so it was a special treat.
I wound a nice warp this morning and started to put it on the loom and then I discovered that the back and forth movement right at chest level that one does when one warps a loom really sets off every single little bit of the VAD wounds. Drat!
I came close to caught up on my journals today and the August 30 NEJM has a great clinico-pathological case conference if you are into medicine. It's a great story, too and I won't say anything more than that.
I think it's bed time for me. Below the fold is today's VAD picture.
We all have wounds, surgical or not. I hope you are able to heal well. Me, too.
Thursday, September 6, 2012
Day 82 - good news, VAD in, dinner had
Today had two pieces of excitement: my bone marrow results came back a day early and I got my VAD. Dr. Hill called me to tell me they were normal just as the nurse was calling me in to pre-anesthesia for my VAD. I did get to talk with him a little bit, but mostly just had to go so I could do my pre-op stuff, i.e., hurry up and wait.
Dr. Hill said the flow cytometry came back normal and the microscope view came back normal except there weren't as many cells as they might expect so something is surpressing my bone marrow, probably the stupid virus. There was NO, not even a speck, of evidence for leukemia resurgence. So, excellent, excellent news. Phew! I am going back to plan A of consolidation #2 on September 14.
I will be getting this consolidation chemo through my brand new port that Dr. Mahon put in today. This was my first time at CMC as a patient and it was as wonderful an experience as I expected. Of course, I knew almost everyone who worked on me today, even in the OR because many of the nurses had worked on the floors before the OR. I saw several of my doctor friends, including Dr. Fahmy. He asked me if I were no longer in practice and I told him I had leukemia which he had not known. CMC clearly takes patient confidentiality very seriously, as he is one of the VP's at CMC and didn't even know why I had evaporated. Impressive. It was delightful to see all my old pals and to feel really well loved, supported and cared for by the people taking care of me.
Dr. Mahon said that Dr. Hill seemed surprised that he just said, "OK, we'll put the VAD in tomorrow." Dr. Mahon and really all the CMC surgeons have such a nice "can-do" attitude. One never feels like they are looking for an excuse to not do something; they answer yes instinctively. Speaking here as a doctor not a patient, it is so wonderful and makes life so much nicer.
Let me tell you about the day. I got there at 2:30 as instructed, hungry and thirsty. They had me put on a gown and wait in the bed. Dr. Mahon had some sort of other case in specials that was taking a longer time than expected and the nurse kept telling me it was a "zoo" today. This is probably about the best one can do. I don't really want to know just before the surgeon takes me to the OR that there were unexpected complications in the previous case. "Oh, he was caught by surprise by that bleeder and, you know, coding a patient takes a lot longer than you might think." Or "he didn't plan the previous case before you all that well and there were several complications that we weren't prepared for."
Anyway, the OR nurse came and interviewed me and was one of my old E200 friends and it turned out also knew Eva who had stopped by to say hi. Then we waited a long time and started to worried that by the time I went to the OR, had my procedure and recovered that poor Ellie would have been alone a long time. So, we enlisted my back up driver, Ana, and Terry went home to Ellie. Soon after he left, Dr. Mahon came in, examined and interviewed me and then the anesthesiologist who was one of the few I hadn't met. He had, however, been at a talk I gave a few months ago about palliative care so that was nice. He told me he thought it was a good talk. He was really interested in how I had gotten my diagnosis, how treatment was going, etc. and we had a very nice chat. I warned him that I was a lightweight for benzo's and he gave me one milligram of versed and I started to tell him the story of how I went to the cancer committee the day I had my suspicious CBC and how the next day everyone kept saying, "did you know you had AML when I saw you yesterday morning?" but I didn't get more than two sentences out. Next time I see him, I'll have to finish the story.
The next thing I knew, port in place, I was back in pre/post. I think I dozed off one more time, then woke ready to eat toast and drink cranberry juice. I dressed, Ana came in and off we went. Home to Terry, Ellie and delicious pizza.
I couldn't figure out exactly where in my day to put this jewel, so the end is as good as anyplace: here's a tip for budding nurses and doctors: "I feel for you, but the people I really feel sorry for are the ones who have to go without drinking for twelve hours" is maybe not the most sympathetic thing to say. A better option might be: "I feel for you; let me see if anesthesia will let you have ice chips." Try it out; it only hurts a little.
Other than that one nurse who I think was trying to be sympathetic, but was just slightly to the side of sympathetic, everyone, absolutely everyone, even the woman who was moving the extra beds around was kind, sympathetic, supportive, even loving. Totally blown away by the great care.
For you, I wish you an experience so much better than you were expecting that you are blown away, too. For me, I'll go with not too much pain and swelling from my new VAD.
Alternatively, I could wish you good news too and for me, I have no further wishes along those lines since I got my good news today.
Wanna see my port? I put it after the jump so you can avoid it if you want to.
Dr. Hill said the flow cytometry came back normal and the microscope view came back normal except there weren't as many cells as they might expect so something is surpressing my bone marrow, probably the stupid virus. There was NO, not even a speck, of evidence for leukemia resurgence. So, excellent, excellent news. Phew! I am going back to plan A of consolidation #2 on September 14.
I will be getting this consolidation chemo through my brand new port that Dr. Mahon put in today. This was my first time at CMC as a patient and it was as wonderful an experience as I expected. Of course, I knew almost everyone who worked on me today, even in the OR because many of the nurses had worked on the floors before the OR. I saw several of my doctor friends, including Dr. Fahmy. He asked me if I were no longer in practice and I told him I had leukemia which he had not known. CMC clearly takes patient confidentiality very seriously, as he is one of the VP's at CMC and didn't even know why I had evaporated. Impressive. It was delightful to see all my old pals and to feel really well loved, supported and cared for by the people taking care of me.
Dr. Mahon said that Dr. Hill seemed surprised that he just said, "OK, we'll put the VAD in tomorrow." Dr. Mahon and really all the CMC surgeons have such a nice "can-do" attitude. One never feels like they are looking for an excuse to not do something; they answer yes instinctively. Speaking here as a doctor not a patient, it is so wonderful and makes life so much nicer.
Let me tell you about the day. I got there at 2:30 as instructed, hungry and thirsty. They had me put on a gown and wait in the bed. Dr. Mahon had some sort of other case in specials that was taking a longer time than expected and the nurse kept telling me it was a "zoo" today. This is probably about the best one can do. I don't really want to know just before the surgeon takes me to the OR that there were unexpected complications in the previous case. "Oh, he was caught by surprise by that bleeder and, you know, coding a patient takes a lot longer than you might think." Or "he didn't plan the previous case before you all that well and there were several complications that we weren't prepared for."
Anyway, the OR nurse came and interviewed me and was one of my old E200 friends and it turned out also knew Eva who had stopped by to say hi. Then we waited a long time and started to worried that by the time I went to the OR, had my procedure and recovered that poor Ellie would have been alone a long time. So, we enlisted my back up driver, Ana, and Terry went home to Ellie. Soon after he left, Dr. Mahon came in, examined and interviewed me and then the anesthesiologist who was one of the few I hadn't met. He had, however, been at a talk I gave a few months ago about palliative care so that was nice. He told me he thought it was a good talk. He was really interested in how I had gotten my diagnosis, how treatment was going, etc. and we had a very nice chat. I warned him that I was a lightweight for benzo's and he gave me one milligram of versed and I started to tell him the story of how I went to the cancer committee the day I had my suspicious CBC and how the next day everyone kept saying, "did you know you had AML when I saw you yesterday morning?" but I didn't get more than two sentences out. Next time I see him, I'll have to finish the story.
The next thing I knew, port in place, I was back in pre/post. I think I dozed off one more time, then woke ready to eat toast and drink cranberry juice. I dressed, Ana came in and off we went. Home to Terry, Ellie and delicious pizza.
I couldn't figure out exactly where in my day to put this jewel, so the end is as good as anyplace: here's a tip for budding nurses and doctors: "I feel for you, but the people I really feel sorry for are the ones who have to go without drinking for twelve hours" is maybe not the most sympathetic thing to say. A better option might be: "I feel for you; let me see if anesthesia will let you have ice chips." Try it out; it only hurts a little.
Other than that one nurse who I think was trying to be sympathetic, but was just slightly to the side of sympathetic, everyone, absolutely everyone, even the woman who was moving the extra beds around was kind, sympathetic, supportive, even loving. Totally blown away by the great care.
For you, I wish you an experience so much better than you were expecting that you are blown away, too. For me, I'll go with not too much pain and swelling from my new VAD.
Alternatively, I could wish you good news too and for me, I have no further wishes along those lines since I got my good news today.
Wanna see my port? I put it after the jump so you can avoid it if you want to.
Day 82 - Dr Mahon and the VAD call
I am not sure if I'll be energetic enough to update tonight after getting my VAD, but will try. "Posting may be sparse," as they say, while I wear off my anesthesia. So if there is nothing more tonight, it just means I'm sleeping well (again. Last night I slept 10 hours and woke 10 minutes before my alarm--love it!).
I did want to tell you about how my VAD got arranged because it's a pretty good story. First I should tell you what a VAD is, huh? A Venous Access Device is a little implantable device that attaches to a blood vessel on one side and pokes up just under the skin on the other side. Nurses who know how to do the magic with special needles and then access a big vein directly without having to poke me five or six times or to dig around. It is put in under a little bit of anesthesia in the operating room and when it's done and healed will look like some one has left a stack of three nickels under my skin near my clavicle. When I get chemo and blood products, the nurses can just use that instead of giving me an IV (that may or may not last/work very well) every time.
Initially, Dr. Hill, Terry and I decided that I would just get my VAD in Lebanon before my chemo next Friday. Then, when the question of if I'd need chemo early came up (see yesterday's post), we decided to try to get it sooner. Dr. Hill called his usual go-to person who said they were having a bad week and he would do it if it were a real emergency, but otherwise, really couldn't. Dr. Hill knows this guy well enough that he knew what that really meant so we decided I would get it in Manchester. Trouble is, Dr. Hill does not know anyone in Manchester and Dr. Manno was out Tues and Wed this week. It seemed the easiest and most straightforward way was for me to arrange it.
My first thought was that I would call one of the physician assistants for the surgical group in Manchester and ask her to arrange it. Unfortunately, it was her day off. I called one of the surgeons and he also did not answer. I should mention that I am doing all of this while lying on my stomach with the top half of my butt exposed because I am being prepped for a bone marrow biopsy. Finally, I developed a molecule of common sense and called their office and asked for the doctor on call. I felt a little bad about bypassing the normal channels (I try really hard just to be a regular patient), but if the situation were reversed, I would want the doctor who was also a patient to just call me so I decided it was OK to "press one if this is a doctor's office" after some soul searching.) The connection was horrible and I didn't recognize Dr. Mahon's voice at first and half of what he said and I said was lost in static so finally after saying "who is this?" about six times, we figured out the basic players in the conversation.
Next, I had to ask under the same circumstances (while not moving because my backside is now a sterile area) if he could place a VAD. At first he thought I wanted a Hickman (which is sort of like a super-PICC and has a bunch of tubes outside my body--not what I wanted) and I had to try desperately to remember the name for the kind of device I wanted (I failed--still don't know it). All the while, every other sentence in each direction is being lost to static and I am wondering when the first shot of lidocaine into my upper butt/lower back is going to occur. I am imagining trying to speak a coherent sentence without changing my tone of voice while Beth injects.
Dr. Mahon sensibly asked for the name of my doctor and called Dr Hill and not more than ten minutes later, Dr Mahon's nurse called me (I'm still lying on my stomach with a half bared butt, but now there is a big needle sticking out of it) to tell me that I should expect a call from CMC scheduling and that they'd do it tomorrow (now today).
I'm ready! I have not eaten since midnight nor drunk since ten so I am thinking the pillow I just finished would be tasty with a little dijon mustard. I am supposed to be there at 2:30, expecting to get surgery at 3:30 and home for dinner by 5:30, blogging by 8:30 if all goes according to plan. If not, I'll try not to wake the neighbors with my snoring.
Hoping for a solid eight hours for all of us (except those who are supposed to be up all night--I wish you your eight hours when you want them).
I did want to tell you about how my VAD got arranged because it's a pretty good story. First I should tell you what a VAD is, huh? A Venous Access Device is a little implantable device that attaches to a blood vessel on one side and pokes up just under the skin on the other side. Nurses who know how to do the magic with special needles and then access a big vein directly without having to poke me five or six times or to dig around. It is put in under a little bit of anesthesia in the operating room and when it's done and healed will look like some one has left a stack of three nickels under my skin near my clavicle. When I get chemo and blood products, the nurses can just use that instead of giving me an IV (that may or may not last/work very well) every time.
Initially, Dr. Hill, Terry and I decided that I would just get my VAD in Lebanon before my chemo next Friday. Then, when the question of if I'd need chemo early came up (see yesterday's post), we decided to try to get it sooner. Dr. Hill called his usual go-to person who said they were having a bad week and he would do it if it were a real emergency, but otherwise, really couldn't. Dr. Hill knows this guy well enough that he knew what that really meant so we decided I would get it in Manchester. Trouble is, Dr. Hill does not know anyone in Manchester and Dr. Manno was out Tues and Wed this week. It seemed the easiest and most straightforward way was for me to arrange it.
My first thought was that I would call one of the physician assistants for the surgical group in Manchester and ask her to arrange it. Unfortunately, it was her day off. I called one of the surgeons and he also did not answer. I should mention that I am doing all of this while lying on my stomach with the top half of my butt exposed because I am being prepped for a bone marrow biopsy. Finally, I developed a molecule of common sense and called their office and asked for the doctor on call. I felt a little bad about bypassing the normal channels (I try really hard just to be a regular patient), but if the situation were reversed, I would want the doctor who was also a patient to just call me so I decided it was OK to "press one if this is a doctor's office" after some soul searching.) The connection was horrible and I didn't recognize Dr. Mahon's voice at first and half of what he said and I said was lost in static so finally after saying "who is this?" about six times, we figured out the basic players in the conversation.
Next, I had to ask under the same circumstances (while not moving because my backside is now a sterile area) if he could place a VAD. At first he thought I wanted a Hickman (which is sort of like a super-PICC and has a bunch of tubes outside my body--not what I wanted) and I had to try desperately to remember the name for the kind of device I wanted (I failed--still don't know it). All the while, every other sentence in each direction is being lost to static and I am wondering when the first shot of lidocaine into my upper butt/lower back is going to occur. I am imagining trying to speak a coherent sentence without changing my tone of voice while Beth injects.
Dr. Mahon sensibly asked for the name of my doctor and called Dr Hill and not more than ten minutes later, Dr Mahon's nurse called me (I'm still lying on my stomach with a half bared butt, but now there is a big needle sticking out of it) to tell me that I should expect a call from CMC scheduling and that they'd do it tomorrow (now today).
I'm ready! I have not eaten since midnight nor drunk since ten so I am thinking the pillow I just finished would be tasty with a little dijon mustard. I am supposed to be there at 2:30, expecting to get surgery at 3:30 and home for dinner by 5:30, blogging by 8:30 if all goes according to plan. If not, I'll try not to wake the neighbors with my snoring.
Hoping for a solid eight hours for all of us (except those who are supposed to be up all night--I wish you your eight hours when you want them).
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