Good Morning All:
As I've promised I'd like to update you on at least some of the midpoint tests that I've been able to take thus far. I was not able to have the bone marrow biopsy yesterday as scheduled because a medicine that I was taking was supposed to have been stopped over the weekend and someone forgot to tell me. As a result the bone marrow biopsy will be taken on Friday (and my admittance for round 5 is tentatively scheduled for Monday, January 5th).
I did get a full-body CT Scan yesterday. The test is very, very short and the results are almost instantaneous. My treatment team had a chance to review the scans of the lymph nodes in my body after I left and my Nurse Practitioner called me later in the day to give me an idea of what they saw.
Audra said the scans looked great. She went on to say that all areas where lymph nodes were swollen due to lymphoma showed great improvement. They had even improved over the unplanned scans taken in October when they were checking for an infection! I guess there is little more to see from the CT Scans than that and the news seems to be very positive, yet again. She did not provide me any measurements but I will get those from her when I'm next at Hopkins and will pass along any more details I get.
--Russ.
Tuesday, December 30, 2008
Sunday, December 28, 2008
Back to business
Yesterday I returned to Hopkins as an outpatient following my mini-hiatus for the holidays. This was to be a basic check of my blood counts though there was thought that I would need platelets while I was there.
As it turns out I did not need platelets yet. My white blood cells are back on line and the reds are holding steady in the low-but-unremarkable range. I was sent home after about 1 or 1.5 hours!
My next trip to Hopkins is Monday. If all goes well I will have my follow up bone marrow biopsy and, I believe, a follow up CT Scan to check the current progress of my treatment regimen. This sets up my first "Envelope" Day for some undetermined date following the analysis of these tests. I must say I'm already anxious about it. Will the news be good as I suspect it will be? Will the bone marrow be responding more slowly than the lymph nodes have been? What if the news isn't good at all?
Many questions will be answered by these tests and, in my experience, plenty of others will be generated in their place. I've come to realize that there are many unknowns with cancer. There isn't a path that cancer patients all travel. First, we start with a common diagnosis and based on our specific type of cancer a treatment plan is devised using the current literature and thinking of the medical community. From there, everything, the treatment plan, the patient, the family, the medical team all need to be prepared for a bit of a roller coaster ride as treatments and processes and timings change with the patient's response to treatment.
I suppose the roller coaster analogy can be extended to include my earlier "Unremarkable" post. My goal, and perhaps the goal of most treatment plans, is to have a pretty boring roller coaster ride. We all get that first hill to climb as we learn of our diagnosis but after that the drop may be steep or short, the twists may jar you a bit, or be fairly smooth, or even non-existent. Other hills on the ride? Perhaps, perhaps not. Corkscrews, loops and any other roller coaster mechanism for turning a cancer patient upside down is to be avoided but can be dealt with. The only problem with this analogy is that roller coaster riders are looking for thrills. Cancer patients are thrilled with the absence of thrills. The roller coaster rider in me is bored by the ride I'm on while the cancer patient in me has both hands in the air and is hollering at the top of his lungs. One thing they can agree on, however, is that neither want to ride this ride again.
--Russ.
As it turns out I did not need platelets yet. My white blood cells are back on line and the reds are holding steady in the low-but-unremarkable range. I was sent home after about 1 or 1.5 hours!
My next trip to Hopkins is Monday. If all goes well I will have my follow up bone marrow biopsy and, I believe, a follow up CT Scan to check the current progress of my treatment regimen. This sets up my first "Envelope" Day for some undetermined date following the analysis of these tests. I must say I'm already anxious about it. Will the news be good as I suspect it will be? Will the bone marrow be responding more slowly than the lymph nodes have been? What if the news isn't good at all?
Many questions will be answered by these tests and, in my experience, plenty of others will be generated in their place. I've come to realize that there are many unknowns with cancer. There isn't a path that cancer patients all travel. First, we start with a common diagnosis and based on our specific type of cancer a treatment plan is devised using the current literature and thinking of the medical community. From there, everything, the treatment plan, the patient, the family, the medical team all need to be prepared for a bit of a roller coaster ride as treatments and processes and timings change with the patient's response to treatment.
I suppose the roller coaster analogy can be extended to include my earlier "Unremarkable" post. My goal, and perhaps the goal of most treatment plans, is to have a pretty boring roller coaster ride. We all get that first hill to climb as we learn of our diagnosis but after that the drop may be steep or short, the twists may jar you a bit, or be fairly smooth, or even non-existent. Other hills on the ride? Perhaps, perhaps not. Corkscrews, loops and any other roller coaster mechanism for turning a cancer patient upside down is to be avoided but can be dealt with. The only problem with this analogy is that roller coaster riders are looking for thrills. Cancer patients are thrilled with the absence of thrills. The roller coaster rider in me is bored by the ride I'm on while the cancer patient in me has both hands in the air and is hollering at the top of his lungs. One thing they can agree on, however, is that neither want to ride this ride again.
--Russ.
Friday, December 26, 2008
So, Russ, Whatever came of that cold?
Good Morning all:
For those who celebrate a holiday at this time of year, Happy Holiday (assuming you celebrate only one of them)! If you don't celebrate anything at all well, I hope you enjoyed time off of work or at least enjoyed the time in the office when the rest of your co-workers were away.
Just a quick update on the cold, where I spent Christmas, etc. Since my Tuesday post my cold improved. To me this seems improbable since my White Blood Cell counts have not yet returned as of Wednesday. Tuesday was, by far, my worst day. My post from the hospital that day (seems there was some confusion, I was treated as an outpatient that day) was one of the brief moments where I was awake during the 24 hours that the calendar named December 23rd. I actually typed the post while lying on my side, using the hunt-and-peck method! I dozed off several times at Hopkins, upon returning home I went straight to bed and pretty much stayed there until the following morning and it seemed like my fever broke several times during the evening.
The 24th was better. My cold had actually moved down on the 'Chief Complaint' list behind a couple of mouth sores, one on my tongue in particular, that was causing me some discomfort while eating. Again, had an appointment at Hopkins on the 24th. I am treated as a plague carrier up there now and am not ALLOWED to linger in the waiting room with other patients. I am to announce my presence to the nurses when I arrive for outpatient appointments so that they can quickly remove me from the ranks of the undefiled! The good news is that all the cultures taken from this cold have been negative. No positive cultures have grown for influenza or RSV or Ebola, Scarlet Fever, Whooping Cough, Anthrax or any other cultures I can imagine they might be testing for up there in Baltimore. So with nothing to indicate that it was anything more sinister we are left to assume it was a simple cold unworthy of a name or the energy to achieve a positive identification.
I felt pretty good on the 24th though the nose continued to run. This marked the third day of a three day facial tissue bender. I was using at least a box a day. It didn't matter the variety. I'd use ones with aloe, anti-viral, even generic varieties couldn't escape my insatiable need for tissues.
Marla and I had agreed some time ago that going to a Children's Christmas Eve service was probably not in the cards for me this year. Instead I got to really cook up a good meal for the family. I cooked a special Christmas Eve dinner for the family while they attended our traditional service. Marla and I enjoyed a nice grilled Delmonico steak from the dutch market while the kids got one of their favorites--popcorn shrimp packaged and frozen by SeaPak (we don't normally cook two main dishes so this was truly a special occasion for them since neither are convinced yet that they like steak). I also made Ratatouille and a new recipe for me, Hot German Potato Salad--a sweet and sour warm potato dish. This last was supposed to be made in a crockpot but I sort of adapated it for baking and went with it. It all came together as Marla and the kids got home and I found that I could eat it with little discomfort from the sores in my mouth. We frittered away the evening and went to bed with sugar plums dancing in our heads.
I awoke Christmas morning and my head felt the sugar plums might have had a bit too much time of it. But, as I got up and around (no rest for the weary on Christmas morning) I found that my head started to clear and my nose wasn't running! I pretty much went all day without a sneeze and had a great time around Marla and the kids, my parents and brother, and some of my extended family from Pennsylvania. Without the aid of even remotely normal White Blood Cell counts I beat a cold in time for Christmas! Not exactly the stuff of legend or even the basis for a cheery holiday special but, man, it felt good to feel like normal. I can only imagine how down-and-out I would have felt if my little cold had actually been the flu.
Again, I hope everyone had a good holiday and for those whose time off continues, enjoy that too!
--Russ.
For those who celebrate a holiday at this time of year, Happy Holiday (assuming you celebrate only one of them)! If you don't celebrate anything at all well, I hope you enjoyed time off of work or at least enjoyed the time in the office when the rest of your co-workers were away.
Just a quick update on the cold, where I spent Christmas, etc. Since my Tuesday post my cold improved. To me this seems improbable since my White Blood Cell counts have not yet returned as of Wednesday. Tuesday was, by far, my worst day. My post from the hospital that day (seems there was some confusion, I was treated as an outpatient that day) was one of the brief moments where I was awake during the 24 hours that the calendar named December 23rd. I actually typed the post while lying on my side, using the hunt-and-peck method! I dozed off several times at Hopkins, upon returning home I went straight to bed and pretty much stayed there until the following morning and it seemed like my fever broke several times during the evening.
The 24th was better. My cold had actually moved down on the 'Chief Complaint' list behind a couple of mouth sores, one on my tongue in particular, that was causing me some discomfort while eating. Again, had an appointment at Hopkins on the 24th. I am treated as a plague carrier up there now and am not ALLOWED to linger in the waiting room with other patients. I am to announce my presence to the nurses when I arrive for outpatient appointments so that they can quickly remove me from the ranks of the undefiled! The good news is that all the cultures taken from this cold have been negative. No positive cultures have grown for influenza or RSV or Ebola, Scarlet Fever, Whooping Cough, Anthrax or any other cultures I can imagine they might be testing for up there in Baltimore. So with nothing to indicate that it was anything more sinister we are left to assume it was a simple cold unworthy of a name or the energy to achieve a positive identification.
I felt pretty good on the 24th though the nose continued to run. This marked the third day of a three day facial tissue bender. I was using at least a box a day. It didn't matter the variety. I'd use ones with aloe, anti-viral, even generic varieties couldn't escape my insatiable need for tissues.
Marla and I had agreed some time ago that going to a Children's Christmas Eve service was probably not in the cards for me this year. Instead I got to really cook up a good meal for the family. I cooked a special Christmas Eve dinner for the family while they attended our traditional service. Marla and I enjoyed a nice grilled Delmonico steak from the dutch market while the kids got one of their favorites--popcorn shrimp packaged and frozen by SeaPak (we don't normally cook two main dishes so this was truly a special occasion for them since neither are convinced yet that they like steak). I also made Ratatouille and a new recipe for me, Hot German Potato Salad--a sweet and sour warm potato dish. This last was supposed to be made in a crockpot but I sort of adapated it for baking and went with it. It all came together as Marla and the kids got home and I found that I could eat it with little discomfort from the sores in my mouth. We frittered away the evening and went to bed with sugar plums dancing in our heads.
I awoke Christmas morning and my head felt the sugar plums might have had a bit too much time of it. But, as I got up and around (no rest for the weary on Christmas morning) I found that my head started to clear and my nose wasn't running! I pretty much went all day without a sneeze and had a great time around Marla and the kids, my parents and brother, and some of my extended family from Pennsylvania. Without the aid of even remotely normal White Blood Cell counts I beat a cold in time for Christmas! Not exactly the stuff of legend or even the basis for a cheery holiday special but, man, it felt good to feel like normal. I can only imagine how down-and-out I would have felt if my little cold had actually been the flu.
Again, I hope everyone had a good holiday and for those whose time off continues, enjoy that too!
--Russ.
Tuesday, December 23, 2008
Overdue update
Good Morning:
Well, I was at Hopkins yesterday and I'm back again today. On Sunday I started showing symptoms of having a cold, primarily a miserable runny nose. I came to Hopkins yesterday and since my temperature was up they did cultures to determine if I had any of the particularly nasty viral infections (influenza, RSV). So far it looks like a mundane little cold that is having a field day in my body without white blood cells to impede it.
I woke up this AM with a fever and so I played good patient and let the nurses know. So, here I am, more cultures being run to rule out who-knows-what and a platelet transfusion in the offing.
--Russ.
Well, I was at Hopkins yesterday and I'm back again today. On Sunday I started showing symptoms of having a cold, primarily a miserable runny nose. I came to Hopkins yesterday and since my temperature was up they did cultures to determine if I had any of the particularly nasty viral infections (influenza, RSV). So far it looks like a mundane little cold that is having a field day in my body without white blood cells to impede it.
I woke up this AM with a fever and so I played good patient and let the nurses know. So, here I am, more cultures being run to rule out who-knows-what and a platelet transfusion in the offing.
--Russ.
Saturday, December 20, 2008
Looooong Day
For those who regularly read the blogs this update will be more of the same from my post earlier in the week about them not having this down to a science yet. If you haven't read that one yet please scroll back a bit to get a sense of the sorts of frustrations that patients learn to live with, or game, along their way through treatment. The level of care at Hopkins is top-notch and I am routinely impressed by everyone from the Techs to the Attending Physicians. However, the interplay between departments can be woeful--another description of a harrowing visit to the outpatient clinic follows:
Yesterday, I knew it was coming. What I didn't expect is that my fate was sealed before I got to the outpatient clinic at Hopkins. When I arrived I was well aware that the schedule was tight. We had determined during my last visit that I would need to be transfused with platelets prior to having the 2nd round 4 spinal tap. I was arriving for a 9:00 appointment and my spinal tap was scheduled for 10:15. The only way even that was going to happen was if, and only if, the platelets were there and waiting for me at 9:00.
I'm not 100% sure what happened, but I did overhear some grumbling, complaining, even some arguing that seemed to indicate that my nurse for the day did not follow the Nurse Practitioner's orders from Monday. The nurse saw my counts from Monday, thought they were rebounding, not falling, and failed to order the platelets. Based on the false premise that blood counts were rebounding her logic was sound--I was at 48,000 platelets on Monday and only needed to be at 50,000 by Friday (according to research that I think the nurse independently gathered to determine if the platelets were necessary as I hadn't heard that threshold before). Even by my slow standard of recovering platelets in the late stages of round 3 I should have gained 10,000 or so per day taking my total to around 90,000.
But again, that was based on a false premise. The nurse should have seen the proximity of my hospital stay and realized that my counts were not likely to be rising. Having worked in HR for a number of years, and, fancying myself an astute observer of people and their behavior I was led to conclude that there is a real tension between the nurse assigned to me yesterday (the first time she had been my nurse) and my nurse practitioner who has been with me from the beginning. So my guess is that no effort was made by the nurse to verify that the platelet transfusion would not be necessary and instead put her efforts into finding fault with the nurse practitioner and undid the plan.
In the end, I arrived to Hopkins and was told by the nurse that the platelets had been canceled and why. The blood was drawn, tested, and by about 10:00 we knew that my platelet count had dropped dramatically, a transfusion was needed, and my 10:15 appointment for the spinal tap was laughable.
And so, we saw the platelets finally around 11:00. They transfused me with them over 1.5 hours to about 12:30. The nurse drew more blood to test to see what I had rebounded to and learned that I was only up to 37,000 platelets (shy of the 50,000 I needed). Based on discussions they decided to move ahead with the spinal tap while I was being transfused with more platelets. Superhuman effort was then needed to coordinate getting platelets from the blood bank, getting neural radiology to squeeze me back in, and physically getting me to that department.
I got the platelets hooked up at 2:00 or so, and was whisked away to neural radiology around 2:15 or so with the thread being that they could hold the window open for so long. I got to radiology and sat (as I normally do) for certainly more than 30 minutes (they had the same patient in there that they had when they called my nurse). My platelet transfusion had since come to an end even though I was told it was important that they be running during the procedure. Despite that, the procedure went well and I'm pleased to report that I currently am without those debilitating headaches I had in prior rounds. I wheeled out of neuro radiology around 3:45.
My earlier blood test revealed that I was also short on red blood cells. I suspected this would be necessary as I've started to recognize the symptoms--for me: pale skin, shortness of breath. As soon as this was confirmed around 10:00 I started pushing for my nurse to have the red blood cells ready for the 2 hour period where I am required to lay flat on my back following a spinal tap. The nurse confirmed to me that they were ready. I took this to mean that she had them and we'd be set to go upon my return to the outpatient clinic. Instead I returned to be informed that now they would contact the blood bank to get the red blood cells conveyed. This took its standard 30 minutes and it was 4:30 by the time the red blood cells got there.
Transfusion of a pint of blood takes 1.5 hours. I got 2 pints. That left my mother and me with a 7:30 PM departure from the appointment that began at 9:00. In essence, we opend and closed the outpatient clinic. Add drive time to this and you are looking at roughly a 14 hour day for my mom who left her house at around 7:00 AM and would get back to her house around 9:00 PM when all was said and done.
But after all that I'm feeling well, glad to scratch off spinal tap number 8, and confident that my counts should rebound by Christmas to allow me to be around family, etc. without concern. That's the best news of all.
--Russ.
Yesterday, I knew it was coming. What I didn't expect is that my fate was sealed before I got to the outpatient clinic at Hopkins. When I arrived I was well aware that the schedule was tight. We had determined during my last visit that I would need to be transfused with platelets prior to having the 2nd round 4 spinal tap. I was arriving for a 9:00 appointment and my spinal tap was scheduled for 10:15. The only way even that was going to happen was if, and only if, the platelets were there and waiting for me at 9:00.
I'm not 100% sure what happened, but I did overhear some grumbling, complaining, even some arguing that seemed to indicate that my nurse for the day did not follow the Nurse Practitioner's orders from Monday. The nurse saw my counts from Monday, thought they were rebounding, not falling, and failed to order the platelets. Based on the false premise that blood counts were rebounding her logic was sound--I was at 48,000 platelets on Monday and only needed to be at 50,000 by Friday (according to research that I think the nurse independently gathered to determine if the platelets were necessary as I hadn't heard that threshold before). Even by my slow standard of recovering platelets in the late stages of round 3 I should have gained 10,000 or so per day taking my total to around 90,000.
But again, that was based on a false premise. The nurse should have seen the proximity of my hospital stay and realized that my counts were not likely to be rising. Having worked in HR for a number of years, and, fancying myself an astute observer of people and their behavior I was led to conclude that there is a real tension between the nurse assigned to me yesterday (the first time she had been my nurse) and my nurse practitioner who has been with me from the beginning. So my guess is that no effort was made by the nurse to verify that the platelet transfusion would not be necessary and instead put her efforts into finding fault with the nurse practitioner and undid the plan.
In the end, I arrived to Hopkins and was told by the nurse that the platelets had been canceled and why. The blood was drawn, tested, and by about 10:00 we knew that my platelet count had dropped dramatically, a transfusion was needed, and my 10:15 appointment for the spinal tap was laughable.
And so, we saw the platelets finally around 11:00. They transfused me with them over 1.5 hours to about 12:30. The nurse drew more blood to test to see what I had rebounded to and learned that I was only up to 37,000 platelets (shy of the 50,000 I needed). Based on discussions they decided to move ahead with the spinal tap while I was being transfused with more platelets. Superhuman effort was then needed to coordinate getting platelets from the blood bank, getting neural radiology to squeeze me back in, and physically getting me to that department.
I got the platelets hooked up at 2:00 or so, and was whisked away to neural radiology around 2:15 or so with the thread being that they could hold the window open for so long. I got to radiology and sat (as I normally do) for certainly more than 30 minutes (they had the same patient in there that they had when they called my nurse). My platelet transfusion had since come to an end even though I was told it was important that they be running during the procedure. Despite that, the procedure went well and I'm pleased to report that I currently am without those debilitating headaches I had in prior rounds. I wheeled out of neuro radiology around 3:45.
My earlier blood test revealed that I was also short on red blood cells. I suspected this would be necessary as I've started to recognize the symptoms--for me: pale skin, shortness of breath. As soon as this was confirmed around 10:00 I started pushing for my nurse to have the red blood cells ready for the 2 hour period where I am required to lay flat on my back following a spinal tap. The nurse confirmed to me that they were ready. I took this to mean that she had them and we'd be set to go upon my return to the outpatient clinic. Instead I returned to be informed that now they would contact the blood bank to get the red blood cells conveyed. This took its standard 30 minutes and it was 4:30 by the time the red blood cells got there.
Transfusion of a pint of blood takes 1.5 hours. I got 2 pints. That left my mother and me with a 7:30 PM departure from the appointment that began at 9:00. In essence, we opend and closed the outpatient clinic. Add drive time to this and you are looking at roughly a 14 hour day for my mom who left her house at around 7:00 AM and would get back to her house around 9:00 PM when all was said and done.
But after all that I'm feeling well, glad to scratch off spinal tap number 8, and confident that my counts should rebound by Christmas to allow me to be around family, etc. without concern. That's the best news of all.
--Russ.
Wednesday, December 17, 2008
Fleeing the house
Since I earned my freedom from having to go to Hopkins today with the harrowing transfusion on Monday one might think that I'd sit around eating bon-bons or otherwise enjoying myself. In many cases you might be right, however, yesterday and today Princess Audrey has been pretty sick: cough, throwing up, etc. So the household is in high alert. The unsick are all wearing masks and again, I might suggest buying stock in the manufacturers of Lysol (is that J&J?). My mother-in-law has taken the form of the cavalry and will remain here with Audrey and once I'm done with my 'computering' will head for the hills. With my blood counts on the verge of collapse I probably can't go anywhere exciting so I'll likely hole up at my folks place for the majority of the day and evening and return home to say goodnight to the kids and to sleep in my own bed.
There is little new to report--just looking forward to learning on Friday that my blood cell counts have dropped (a little early, I'm predicting) that I successfully finished round 4's spinal taps (and number 8 of 12), and that I've been transfused with all that I need to keep me rolling along.
--Russ.
There is little new to report--just looking forward to learning on Friday that my blood cell counts have dropped (a little early, I'm predicting) that I successfully finished round 4's spinal taps (and number 8 of 12), and that I've been transfused with all that I need to keep me rolling along.
--Russ.
Tuesday, December 16, 2008
They know what they are doing, but its not a science
Good Morning All:
I must say that I'm amazed at how much of a BUZZ my picture with Santa is generating. Marla comes home from just about every place she goes with someone reporting to have seen the picture and how glad they were to see me smiling. Rest assured, I am smiling fairly frequently and hopefully the picture helps convey to all that physically I am still in good shape (albeit a bit more chubby than usual since I've been told to eat protein and calories).
I wanted to share a brief story about my out-patient visit yesterday that underscores just how complicated this whole cancer treatment business is and the sorts of things that can fall through the cracks. As I go along I'm learning to 'game' the system and yesterday was yet another lesson on what areas need to be 'gamed'.
I went to Hopkins yesterday with my father. I brought my library book and little else to occupy my mind. I just left the inpatient hospital stage and didn't feel like I would need a transfusion, wasn't in line for any spinal taps or other procedures, so there wasn't any reason to believe that the visit would take any longer than to complete the routine blood tests. WRONG!!! As it turned out I was borderline in needing a blood transfusion and as an inducement they offered to allow me to skip Wednesday's out-patient visit. So, I said 'OK' and they started the process for getting some new blood into my veins.
You might think that this is a fairly routine process. They know my blood type, the blood bank is in the hospital . . . just pull the blood from the correct bin on the shelf, put it on a cart, deliver it to my nurse and away we go! Well, no, it isn't that way. You see, the blood bank will not issue blood unless it has tested my blood type within the past three days. Your reaction to this might be similar to mine when I first learned of this (but . . . once you know someone's blood type . . .) but when I asked I was reminded that many patients where I am being treated have had bone marrow transplants. In such circumstances a patient's blood type may well change and the issuance of the incorrect blood type would be devastating--so now I know and understand the policy.
When I first was made aware of this policy it was conveyed to me that my blood had simply not been drawn in the past three days and for that reason my blood type needed to be confirmed: a two-hour process. So, yesterday I pulled the ace out of my sleeve only to learn it came from the wrong deck of cards. "But I just left the inpatient ward. My blood was drawn two days ago" I smugly reminded my nurse (there is often confusion as the handoff occurs between in- and out-patient wards, usually in the form of discrepancies in appointment times, etc.). Nurse Nicole gave it right back and further informed me that just because my blood was drawn and tested for the normal blood chemistry does not mean that they tested the blood type. She went on to say that it was not routine for the in-patient nurses to request such a test since it isn't always needed and the two-hour delay in the instances where it is needed is acceptable since they have a captive audience! Nurse Nicole and I devised a scheme on the spot that I will need to enact in rounds 5 through 8 whereby I request that my blood type be tested on my final day of my inpatient stay so that the information is updated in the system in advance of my out-patient processes.
So, the blood drawn yesterday at 10:00 showed at 11:00 I needed a transfusion. The typing of my blood took two hours (or more). Nurse Nicole hounded the blood bank throughout the lunch hours and Dad and I sat waiting for the blood until 2:30. I needed two pints but they only release one at a time. A transfusion of a pint takes roughly 1.5 hours so the resourceful Nurse Nicole called down to the blood bank after 1 hours of transfusion to request the next pint of blood. For once the timing worked and the second pint showed up only about 5 or 10 minutes after the first pint had been completely transfused. Around 4:00 the second pint was hooked up. I got my blood and Dad and I strolled out of the inpatient office around 5:30--a very long time to sit in a doctor's office. It was not completely unproductive, however. I was able to confirm the complete lack of programming on daytime television, had fun laughing each and every time I watched President Bush duck a pair of Hushpuppies and my dad completed 16 sudoku puzzles (mostly easy ones I might point out) in about 4 hours.
New topic, briefly. In today's sports section of the Washington Post is an article about the Olympic swimmer who participated in the Olympics despite his diagnosis of testicular cancer prior to the games. The article (or should I say the swimmer) does a good job of capturing some of the newest shifts in my thinking and mental state as I go through my current process. I have not yet written about the safety net that surrounds a cancer patient during the process of achieving remission--but I will. This swimmer is now where I hope to be in a few months. No cancer in the body and undergoing periodic treatment to discourage its return. But the vast majority of the article focuses on the not-knowing and the general lack of a safety net when the cancer patient moves beyond the induction phase of his/her treatment. If you would like to gain insight into some of my thoughts/concerns as I progress and move toward remission this article will quickly give you an understanding.
Thanks for hanging in there on one my longer recent posts!
--Russ.
I must say that I'm amazed at how much of a BUZZ my picture with Santa is generating. Marla comes home from just about every place she goes with someone reporting to have seen the picture and how glad they were to see me smiling. Rest assured, I am smiling fairly frequently and hopefully the picture helps convey to all that physically I am still in good shape (albeit a bit more chubby than usual since I've been told to eat protein and calories).
I wanted to share a brief story about my out-patient visit yesterday that underscores just how complicated this whole cancer treatment business is and the sorts of things that can fall through the cracks. As I go along I'm learning to 'game' the system and yesterday was yet another lesson on what areas need to be 'gamed'.
I went to Hopkins yesterday with my father. I brought my library book and little else to occupy my mind. I just left the inpatient hospital stage and didn't feel like I would need a transfusion, wasn't in line for any spinal taps or other procedures, so there wasn't any reason to believe that the visit would take any longer than to complete the routine blood tests. WRONG!!! As it turned out I was borderline in needing a blood transfusion and as an inducement they offered to allow me to skip Wednesday's out-patient visit. So, I said 'OK' and they started the process for getting some new blood into my veins.
You might think that this is a fairly routine process. They know my blood type, the blood bank is in the hospital . . . just pull the blood from the correct bin on the shelf, put it on a cart, deliver it to my nurse and away we go! Well, no, it isn't that way. You see, the blood bank will not issue blood unless it has tested my blood type within the past three days. Your reaction to this might be similar to mine when I first learned of this (but . . . once you know someone's blood type . . .) but when I asked I was reminded that many patients where I am being treated have had bone marrow transplants. In such circumstances a patient's blood type may well change and the issuance of the incorrect blood type would be devastating--so now I know and understand the policy.
When I first was made aware of this policy it was conveyed to me that my blood had simply not been drawn in the past three days and for that reason my blood type needed to be confirmed: a two-hour process. So, yesterday I pulled the ace out of my sleeve only to learn it came from the wrong deck of cards. "But I just left the inpatient ward. My blood was drawn two days ago" I smugly reminded my nurse (there is often confusion as the handoff occurs between in- and out-patient wards, usually in the form of discrepancies in appointment times, etc.). Nurse Nicole gave it right back and further informed me that just because my blood was drawn and tested for the normal blood chemistry does not mean that they tested the blood type. She went on to say that it was not routine for the in-patient nurses to request such a test since it isn't always needed and the two-hour delay in the instances where it is needed is acceptable since they have a captive audience! Nurse Nicole and I devised a scheme on the spot that I will need to enact in rounds 5 through 8 whereby I request that my blood type be tested on my final day of my inpatient stay so that the information is updated in the system in advance of my out-patient processes.
So, the blood drawn yesterday at 10:00 showed at 11:00 I needed a transfusion. The typing of my blood took two hours (or more). Nurse Nicole hounded the blood bank throughout the lunch hours and Dad and I sat waiting for the blood until 2:30. I needed two pints but they only release one at a time. A transfusion of a pint takes roughly 1.5 hours so the resourceful Nurse Nicole called down to the blood bank after 1 hours of transfusion to request the next pint of blood. For once the timing worked and the second pint showed up only about 5 or 10 minutes after the first pint had been completely transfused. Around 4:00 the second pint was hooked up. I got my blood and Dad and I strolled out of the inpatient office around 5:30--a very long time to sit in a doctor's office. It was not completely unproductive, however. I was able to confirm the complete lack of programming on daytime television, had fun laughing each and every time I watched President Bush duck a pair of Hushpuppies and my dad completed 16 sudoku puzzles (mostly easy ones I might point out) in about 4 hours.
New topic, briefly. In today's sports section of the Washington Post is an article about the Olympic swimmer who participated in the Olympics despite his diagnosis of testicular cancer prior to the games. The article (or should I say the swimmer) does a good job of capturing some of the newest shifts in my thinking and mental state as I go through my current process. I have not yet written about the safety net that surrounds a cancer patient during the process of achieving remission--but I will. This swimmer is now where I hope to be in a few months. No cancer in the body and undergoing periodic treatment to discourage its return. But the vast majority of the article focuses on the not-knowing and the general lack of a safety net when the cancer patient moves beyond the induction phase of his/her treatment. If you would like to gain insight into some of my thoughts/concerns as I progress and move toward remission this article will quickly give you an understanding.
Thanks for hanging in there on one my longer recent posts!
--Russ.
Sunday, December 14, 2008
Midway
Well, I've made it to another milestone. I'm home now from my 4th round of treatment, or, halfway. I'm glad to be on the downslope of this process and am eager to have the tests that will show my progress to date.
The hospital stays are getting to be tedious and the homecomings all the more sweet as this process goes along. I can only imagine how I'll feel coming home from number 8.
A brief correction to a previous post is in order. The spinal tap I had while in the hospital was not number 5, it was number 7. Number 8 of 12 is scheduled for sometime this coming week.
All told I feel pretty good. Like the prior 'B' treatment, I've retained a lot of fluids from my hospital stay. It is somewhat uncomfortable to deal with and interferes with sleep but being home more than makes up for any of that.
--Russ.
The hospital stays are getting to be tedious and the homecomings all the more sweet as this process goes along. I can only imagine how I'll feel coming home from number 8.
A brief correction to a previous post is in order. The spinal tap I had while in the hospital was not number 5, it was number 7. Number 8 of 12 is scheduled for sometime this coming week.
All told I feel pretty good. Like the prior 'B' treatment, I've retained a lot of fluids from my hospital stay. It is somewhat uncomfortable to deal with and interferes with sleep but being home more than makes up for any of that.
--Russ.
Friday, December 12, 2008
Update
Well this round has seen its share of delays. Not only did I wait a week for my platelets to elevate enough to allow for treatment but there have been delays during my inpatient stay here to where I'll need to be in the hospital a little longer than I might have hoped. Where there was an outside chance that I'd go home today if everything went smoothly it is now looking like either late Saturday or early Sunday that I'll get to return home.
Much that happens here is based on timing. When the administration of one drug ends a test gets run and another drug begins. When these transitions don't run smoothly hours of delay quickly turn into new days in the hospital.
All-in-all things continue to progress in my favorite unremarkable fashion. I had my 5th spinal tap yesterday and it went well as spinal taps go.
As an update to yesterday's post, I did learn from my evening nurse, Amy, that the people who brought around the blankets, hats, scarves come almost monthly to Hopkins! Knowing that there are people who spend months as an inpatient here I am certain they look forward to that!
--Russ.
Much that happens here is based on timing. When the administration of one drug ends a test gets run and another drug begins. When these transitions don't run smoothly hours of delay quickly turn into new days in the hospital.
All-in-all things continue to progress in my favorite unremarkable fashion. I had my 5th spinal tap yesterday and it went well as spinal taps go.
As an update to yesterday's post, I did learn from my evening nurse, Amy, that the people who brought around the blankets, hats, scarves come almost monthly to Hopkins! Knowing that there are people who spend months as an inpatient here I am certain they look forward to that!
--Russ.
Thursday, December 11, 2008
Just how much does it mean?
Hospital stays are simply not a treat. On top of the constant reminder of your illness by simply being here there is the diminished sleep, missing family, friends, and the comforts of home. The food isn't great and there's always plenty to complain about with the hospital gowns!
Prior to my cancer diagnosis I wondered about the charitable things people do around this time of year and just how much they meant to someone who was in the hospital with clearly a lot on their mind. Yesterday, I had a chance to experience this form of charity not once, but twice and would like to share my impressions.
First, I was visited by Santa! While this sounds somewhat juvenile it was a nice diversion, he came into my room without a mask (which is a breach of flu-season precautions but would have ruined the moment). He apparently was a patient at Hopkins several years ago, who knew!? He gave me a stuffed reindeer and, when I mentioned I had two kids, he handed me a second astutely figuring where the first would end up. My parents happened to be visiting at the time and my mom snapped the picture at the top of the post.
Following Santa by minutes were several gurneys loaded down with hand knitted hats, scarves, and lap blankets. I was invited to take a look and pick something out. I chose a very nice looking blanket that I had a chance to use last night while watching a little TV.
So what all did this mean to me? Does it help? I have to say that both events brightened my day considerably and to write about them at least brings another smile to my face. I can't speak for the other 14 patients on the ward but I'd say that if you have supported similar charities or efforts in the past you should feel that their mission has been achieved.
This gets me to wondering, however: I'm 'fortunate' enough to be going through this around this charitable time of year. How many similar efforts happen in the middle of the summer? How many patients are in the hospital on their birthdays with little to no fanfare? I plan to ask the nurses these questions for my own information, but I think I know the answer.
Wednesday, December 10, 2008
Here at Hopkins
Good Morning All:
Well, I finally got round 4 underway. Delays continue a bit as there was some confusion regarding the chemo drug order so I should get those underway this AM.
This should be a fairly short stay in the hospital and I'm looking forward to being home this weekend. This is a tough time of year to be away from Marla and the kids but the timing should work out for me to be able to get out and about on Christmas day.
I've beeen made aware that I haven't waxed philosophical recently. I have to say that my focus has been on getting this round moving and so the 'thought' that happens before those sorts of posts hasn't really been happening. Now that I've got lots of time to myself here in the hospital perhaps that will change later today or tomorrow.
--Russ.
Well, I finally got round 4 underway. Delays continue a bit as there was some confusion regarding the chemo drug order so I should get those underway this AM.
This should be a fairly short stay in the hospital and I'm looking forward to being home this weekend. This is a tough time of year to be away from Marla and the kids but the timing should work out for me to be able to get out and about on Christmas day.
I've beeen made aware that I haven't waxed philosophical recently. I have to say that my focus has been on getting this round moving and so the 'thought' that happens before those sorts of posts hasn't really been happening. Now that I've got lots of time to myself here in the hospital perhaps that will change later today or tomorrow.
--Russ.
Tuesday, December 9, 2008
The end of the delay - hopefully
Good Morning All:
Sorry for the gap in posts. There really hasn't been much news and we had a fairly busy weekend. So, not much to say and not a lot of time to say it . . .
I had my counts checked on Saturday and the platelets were still low. I had another appointment yesterday and they were high enough to be admitted. There was a slim chance that I would have simply stayed at Hopkins yesterday but beds were tight. I was told that there was a better chance that I could be admitted today. So I am patiently waiting by the phone for the call to Baltimore.
I wanted to remark briefly on the past week or so as this small disappointment continued. It is amazing to me just how important 'attitude' has become. While I don't believe that I let the disappointment get me off of my game, I can definitely say that it had me teetering a bit on the edge of negativity. There were times where a perfect storm of concern, disappointment, and anxiousness was threatening my normal cheery outlook. There were times where I could really sense how close a descent into despair might be, and it was a bit frightening. I appreciate the kind words of those who reassured me that the slow platelet recovery was normal.
I'm continuing to soldier on and it is much easier to do just that knowing that I've got the green light for round 4 finally. I met with Dr. Connolly yesterday and she indicated that I would go through the mid-treatment tests (CT Scans, bone marrow biopsy) a couple of weeks (right before Christmas?) following my admission. I'll certainly share my progress when I know more definitively.
--Russ.
Sorry for the gap in posts. There really hasn't been much news and we had a fairly busy weekend. So, not much to say and not a lot of time to say it . . .
I had my counts checked on Saturday and the platelets were still low. I had another appointment yesterday and they were high enough to be admitted. There was a slim chance that I would have simply stayed at Hopkins yesterday but beds were tight. I was told that there was a better chance that I could be admitted today. So I am patiently waiting by the phone for the call to Baltimore.
I wanted to remark briefly on the past week or so as this small disappointment continued. It is amazing to me just how important 'attitude' has become. While I don't believe that I let the disappointment get me off of my game, I can definitely say that it had me teetering a bit on the edge of negativity. There were times where a perfect storm of concern, disappointment, and anxiousness was threatening my normal cheery outlook. There were times where I could really sense how close a descent into despair might be, and it was a bit frightening. I appreciate the kind words of those who reassured me that the slow platelet recovery was normal.
I'm continuing to soldier on and it is much easier to do just that knowing that I've got the green light for round 4 finally. I met with Dr. Connolly yesterday and she indicated that I would go through the mid-treatment tests (CT Scans, bone marrow biopsy) a couple of weeks (right before Christmas?) following my admission. I'll certainly share my progress when I know more definitively.
--Russ.
Thursday, December 4, 2008
Further Delays
. . . well the disappointment continues.
Again, my platelets continue to rebound at a very methodical pace and so my admittance for round 4 is in a holding pattern. My next appointment is Saturday with the possibility of being admitted on Sunday.
I'm lead to believe that there is nothing particularly alarming about the slow pace of recovery of the platelets and that there is little I can do (nutrition? voodoo?) to speed their production. If anyone has a suggestion to the contrary please let me know. Otherwise, I'm still at home really struggling to be patient.
--Russ.
Again, my platelets continue to rebound at a very methodical pace and so my admittance for round 4 is in a holding pattern. My next appointment is Saturday with the possibility of being admitted on Sunday.
I'm lead to believe that there is nothing particularly alarming about the slow pace of recovery of the platelets and that there is little I can do (nutrition? voodoo?) to speed their production. If anyone has a suggestion to the contrary please let me know. Otherwise, I'm still at home really struggling to be patient.
--Russ.
Tuesday, December 2, 2008
Delays
Good Morning All:
Well, the news wasn't as I might have hoped yesterday. While my platelet counts are recovering they are not yet at a level that will permit me to begin round 4. I was a little disappointed and surprised that I'll need to wait several days before getting another check of the blood counts. This means that the earliest I'll be admitted would be Friday.
This isn't a major deal except that it is a rare disappointment in what has been an unremarkable series of treatments. So, in the meantime, I'm home. I'll be engaging in my regular 'schedule' of daily activities and will be sprinkling in some well-timed holiday preparations while I have energy, time and white blood cells.
--Russ.
Well, the news wasn't as I might have hoped yesterday. While my platelet counts are recovering they are not yet at a level that will permit me to begin round 4. I was a little disappointed and surprised that I'll need to wait several days before getting another check of the blood counts. This means that the earliest I'll be admitted would be Friday.
This isn't a major deal except that it is a rare disappointment in what has been an unremarkable series of treatments. So, in the meantime, I'm home. I'll be engaging in my regular 'schedule' of daily activities and will be sprinkling in some well-timed holiday preparations while I have energy, time and white blood cells.
--Russ.
Subscribe to:
Posts (Atom)
Posts
