While growing up the phrase "Hey, I've got a great idea!" ususually preceded some sort of an adventure. A wide variety of grass stains, hitchhikers on our shoelaces, prickerbush scratches and bruises followed us home. At some times those ideas weren't terribly good ones, (smashing or clapping bees between your two ungloved hands comes to mind, eating unripe crabapples, or even ripe crabapples follows quickly behind), and Friday had a series of events that stemmed from me saying something like: "Hey, I've got a great idea!"
Cue whatever music you might use to underscore comedic chaos: The Benny Hill Show theme, circus music, something having to do with Keystone Cops, The Three Stooges, or even the Bad News Bears.
So . . . they put two IVs in my left arm on Thursday before they pulled out the infected catheter. One, which is still in place, is in the area of my wrist sitting below my thumb. The second was placed neatly where most associate blood draws--right there in the crook of the elbow. All was well, medicines were flowing until I went to sleep Thursday night.
At the risk of providing more information than you'd like to hear, I tend to sleep in various positions through the night but an overriding theme seems to be that my left arm is BENT. The effect of all this bending was that the flexible tip of the IV that sticks into the vein was getting crimped. Unless I could find a way to sleep with my arm straight my pump would issue a shrill rhythmic beep and display a warning: reading something like "Patient Line Occluded".
Of course we didn't figure this out right away and there were several curses hurled in a surprisingly dark hospital room as the nurses tried to find any place at all crimped in my lines. My nurse was about to swap out the pump as defective when a thought came to one of us to look at the needle site itself. When I showed the evening nurse (it was the day nurse who placed the IVs) where it was, she said "Oh, I could imagine that the way your arm bends right there that the flexible end of the needle is crimping."
"Perhaps tomorrow we can think about moving the site" I replied. Maybe I should have gone ahead and said: "Hey, I've got a great idea . . ."
But all of that was between Midnight and 3:30 in the morning. There was still sleep to be had and I was determined to make use of it if I could find a way. And where I had determination, my sleeping body had defiance in its soul. I believe that in the 2 hours to 5:30 I set the alarm off three more times. Each time I would carefully put myself into bed (enough slack in the lines so I don't rip them out?, can the nurses reach the pumps?, its cold, why did they make this bed in such a way that the covers don't go higher than my chest?). I would drift mercifully in to a nice drug-enhanced sleep and start the recharging process. Then, my relaxed and comfortable body would put on an ugly sneer (because it was both a malicious act upon myself and completely out of my control) and gently put that left arm right where it wants to be . . .folded in by my chest. A few seconds later the starved pump clicks fervently away and gets no liquid to be moved. Beep, beep, beep. Russ buzzes nurse, nurse arrives, Russ apologizes profusely, nurse sighs and saves her own ears from the incessant high pitched beeping. Rather, rinse, repeat until you get to your normal 5:30 wakeup time and then punt.
So, I did the sort of things that I typically do in the early mornings. I take a leisurely pace to getting ready and mix that with gathering information that I want or need to start my day. As her duties came to a close the night nurse, experienced, and perhaps a bit portly, who had dealt with the headaches was willing to put all of us out the misery being created by the location of this single IV. She took my suggestion when I reiterated it. She nooded her head eagerly and said that's a great idea. In essence, "I know where there are a lot of bees!"
So she went off and got a small kit for removing IVs--really just a few wipes for removing the glue on tape and a gauze pad--and some surgical tape. In no time the offending IV was no longer attached and was unceremoniously dumped in the unsterile field (I won't be explaining this, ask if you must). This nurse and I were united in our desire to remove and replace but we had to be concerned about the bleeding risk! Ahhhh, don't forget that I am a cancer patient. At any time I may be devoid of platelets. You can't just insert the IV elsewhere anyway. So we slowed it down for full and complete thought.
I pointed at possible locations (meaning veins I could see, disregarding through ignorance whether they could tolerate the punishment or be reached without severing limbs) where the IV might go instead. The nurse grabbed her gauze, placed it carefully over the needle and pulled the needle gently out while applying pressure on the gauze to staunch the bleeding. I offered to take over, the confident sign of an experienced patient and so I held my right finger down tightly on the little spot in my left elbow. The nurse continued to get herself together for an IV placement.
Here's where comedic music of choice much reach its fever pitch.
At an appropriate moment according to her, the Nurse slowly lifted the gauze. She and I both noticed the same three things: 1. there was a big bruise developing under the IV site in my elbow, 2. there was a big pool of blood starting to well around my elbow joint, and 3. the amount of saturation of blood on gauze was enough to tell how much longer this gauze pad had before beyond its useful life.
The now sleepy night nurse and I exchanged glances. She spied another packet of gauze and opened it frantically. I cooly pointed out that I've received larger gauze pads for much smaller issues in the past, so there must be some around somewhere. As she gathered herself for a Paul Revere-like gallop for gauze. I dutifully held pressure down on the wound and waited for the nurse's return.
I could hear her footfalls and her calling to other nurses as she ran. I heard "What the. . . there isn't a single gauze pad in this cabinet!" and then, to another nurse "Where can I find size __ gauze pads they filled the whole thing up with gloves?!"
This newly enlisted nurse took up with the wrong cause. "I don't know why they do that when putting back gloves?", she said. I quietly coached my nurse from my room: "if she can help us then redirect her quickly, otherwise move on to the next possible location". My nurse instead asked, "yeah, who puts away the gloves when they come in?"
I saw red. I mean I saw red when I looked down at the 'fresh' gauze that would see me through until my nurse returned. It was still a gauze and somehow the accumulated blood was contained. I might have bought more time if I left well enough alone, but what do you do with gauze that is not taped down? Well, of course, you take a peek. I would be foolish not to take a peek, right?
I heard my nurse start galloping off for another unit. I prayed she didn't need the pharmacy's help because they are not Minute-Man worthy, something on the slow side. But not knowing where she went I turned my attention toward my bleeding elbow. It wasn't a small amount of blood. There was a pool of it cupped in my elbow joint and tendrils had overflowed and were dripping down now from the opposite, angled elbow and onto the floor. I stood up and started for the bathroom for . . . papertowels, perhaps? I got a couple of steps until I realizeed that I was still teathered at this point to the pole that contains my meds, etc. It would need to be unplugged and then the operation would need 2 hands. I quickly glanced at the IV and noticed that most of the needle had been removed from site and gently pushed it forward hoping that I had just put the finger back in the dike.
From the hallway outside my room I hear the footsteps of the night nurse, she's returning just as the amount of blood on the floor of my room is enough to be described as disturbing (but not yet grisly). It really isn't a dangerous loss of blood to this point but I'm tiring of using my right hand as a cup for blood to drip in as I hear the night nurse breathlessly telling the nurses at the station just how far she had to run to get the large gauze pads that she now held and was regaling them with how she braved the near-avalanche of gloves at her first stop. I summoned up my best Monty Python-esque downtrodden serf and said, "uhm . . . be careful when you come in (hint, hint), there's a significant amount of blood on the floor.
Cue close on the comedic music. . .
The night nurse finally strode in claiming to have established outposts in many FLAUs (Four Letter Acronym Units). I prompted her non-verbally to view the blood on my arm, elbow, and floor and she cursed again. She quickly opened the gauze and removed it and the needle in one swift motion. She placed a gauze significant enough for the job on the needle site and folded the extra cloth into squares on top of the original corner she used. Initially she and I both pressed on that gauze for a while. I was trying to help and free up the medical prefessional to save me from bleeding out, I think she was trying to prove that I might be the reason I was bleeeding out in the first place. At any rate, we both pressed. After some time passed she got some alcohol wipes and started cleaning up my arm, elbow, and the floor. Only then did she get a new gauze pad and some tape. And we taped that gauze pad down like you wouldn't believe.
I looked at the night nurse and said, "Well after that you are getting to the end of your shift? Would you like to take an attempt at replacing it before you go?" I think her initial acquiessence was ingenuine--she didn't particularly look confident--and in truth I didn't see her again until the day shift nurse, the same from yesterday, and much earlier than ever before began her dealings with me. The process to actually remove and replace the single IV dodged a Spinal Tap and an Echo Cardiogram, and was not actually carried out by the day shift nurse--she stuck me twice with no results to show for it, save more gauze and tape appropriately applied. The day nurse summoned the "guru" on the 5th floor and the guru brought her apprentice (?) and a sonogram machine to locate good veins. The guru studied my arms (I had long since offered to move everything to my dominant hand/arm if they thought it would work) and settled on two different spots one a spot in my triceps area and another a spot in my left hand. These veins did in the expert but the apprentice didn't seemed daunted by the challenge yet.
The apprentice snapped up the sonogram wand, found her target, got the appopriate gauge needle and jabbed it uncomfortably fast and certainly deeper than the expert or the kindly day nurse ever had. She he had bloodflow.
So when I typed the the most recent post it was with the single IV placed down near the thumb, and a big old patch in the middle of my elbow on the same arm--not really an IV, but it was supposed to be one. It would now count one of 6 recently abandoned IV sites in my arms.
Despite that ordeal I am now back to the lines in my neck. I spoke up when it became clear that the central line was going to be the path that we'd take. The doctors did a good job of hearing the complaints and placing the line in a more comfortable and workable spot. The good thing is these lines get to be associated only with the tough times in the hospital as they are not conducive for going home and will be replaced with something more durable and comfortable when the time is right. Thank goodness.
The next round of chemo started yesterday . . . wish me luck.
As always, thanks for reading:
--Russ.
Saturday, May 29, 2010
Friday, May 28, 2010
Ah. There's a tugboat now.
When I look out of my hospital window taking great care to avoid the almost-finished parking garage, and use the squat, but-still-taller-than-most red-brick apartmentment building and the taller structures of the aforementioned parking garage as a frame. I actually have a quite scenic view of Baltimore Harbor (Huh, a tug pulling a tanker! Haven't seen that yet). My view looks over the roofs of some rowhouses and federal style buildings that all seem to be in good shape, lacking the wear-and-tear you find in parts of the city that are, as I look, just one block over. My view of this section of the city seems to indicate that these buildings face each other over some sort of plaza or walkway though it is possible that there is a street there and the traffic is simply hidden from me. This plaza runs from almost the lower left hand corner of my "frame" to about halfway up the right side. There are treetops that peek beyond the roofs of the rowhouses to the right, but they do not seem to be terribly mature and so I might guess that these buildings are not terribly old.
Beyond these buildings are the steeples of two churches, the closest could be of any denomination though I might guess from its size and relative grandeur it is a Catholic Church. It has weatherd tan stone walls and octagonal steeple with a smallish (by comparison) gold cross at the top. The roofs of both the church-proper and the steeple appear to be slate, though I suspect much might appear to be slate when it has been well-drenched in evening rains. The second church building (if it is one at all, now that I've stared at it quite a bit) is placed between the Catholic Church and the harbor. It is more of a simple red building with what I believe is a bell tower on top. What I might have initially thought was the steeple for this church might actually be an adornment of the front of the first church.
It is with all this that 1/2 of my "frame" has been filled. But the interesting things happen on the harbor--a zigzag of water for the harbor around what must be docks or fortuitous juts of land sticking out into it. Add to the picture an appropriate amount of background and sky (I'll keep the bridge and mentally erase the smokestacks). The helicoptors that buzz along that sky and sometime fly right toward me are also a nice source of amusement (when one doesn't think about why helicoptors come to Hopkins).
I've woken to the sound of pump alarm bells too often this AM to try to sleep any longer and so here I am posting. And reflecting on a pretty trying week. In my last post I mentioned, and even made light of, the fevers I was having. Well, a couple turned into several days in a row, with fever coming and going only with the administration of Tylenol. Finally, on Tuesday morning this week I woke up with a fever. One I did not know about before going to bed (for the astute readers) and it had spiked to 103.8 degrees. I was admitted at Hopkins in time for rounds that morning. These fevers, given their intensity, had been pegged for an infection of some sort but . . . all the king's men and all the king's horses couldn't get Russ out of bed and into his regular discourses.
And so we were caught in this loop. Everyone would look at me and my symptoms and say, "he's got an infection . . . somewhere". Everyone would look at the roster of medication I was taking and say, "We've got him covered for viral, bacterial, or fungal infections".
As it turns out, a blood culture taken 5 days ago has now grown out and shows a seemingly signficant infection (given Marla's reaction when I reiterated what little I knew at that point) contained in the lines of my catheter. Easy to treat--yank the catheter out. And so we did, yesterday. But I'm still getting the meds and the fluids and so that means I now have two (stay tuned for tomorrows post where I explain that this statement isn't exactly true) traditional IV ports in my left arm. I am pleased to report that I'm closing in on 24 hours without a fever, I also saw a return in my appetite last night, and I awoke without a headache for the first time in about a week.
But probably the most significant news came during the hunt for the source of the fevers. As various tests were run and crossed off the list, the question came up that perhaps my fever was a result of a recurrence of leukemia in the marrow. To date, even what must be only a few weeks ago, all marrow checks had been clean. But, running out of options they again did a bone marrow biopsy. I learned on Wednesday afternoon that there were leukemic cells in my marrow. In essence, this means that my first attempt at remission has not been successful. And now we are full-steam toward a second attempt. The real handwringing comes with the knowledge that each subsequent attempt comes with less and less chance of achieving remission. Don't ask me numbers. I've forgotten them. However, I don't believe they depicted staggering odds against achieving remission on a second attempt. I choose to remain hopeful.
The comforting news is that the bone marrow administrative processes are behind us. This means that when I achieve remission I will be able to be placed directly into the transplant routine and hopefully we could transplant within days, not weeks. So it seems I will be here at Hopkins for a bit as I believe all of these processes may well bleed (pun intended) into one another. If that is the case, I may have this nice view to myself for a number of weeks while getting chemo and recovering. It is a good one for sitting and thinking. Sitting and thinking is good for blogging. Beware.
As always, thanks for reading:
--Russ.
Beyond these buildings are the steeples of two churches, the closest could be of any denomination though I might guess from its size and relative grandeur it is a Catholic Church. It has weatherd tan stone walls and octagonal steeple with a smallish (by comparison) gold cross at the top. The roofs of both the church-proper and the steeple appear to be slate, though I suspect much might appear to be slate when it has been well-drenched in evening rains. The second church building (if it is one at all, now that I've stared at it quite a bit) is placed between the Catholic Church and the harbor. It is more of a simple red building with what I believe is a bell tower on top. What I might have initially thought was the steeple for this church might actually be an adornment of the front of the first church.
It is with all this that 1/2 of my "frame" has been filled. But the interesting things happen on the harbor--a zigzag of water for the harbor around what must be docks or fortuitous juts of land sticking out into it. Add to the picture an appropriate amount of background and sky (I'll keep the bridge and mentally erase the smokestacks). The helicoptors that buzz along that sky and sometime fly right toward me are also a nice source of amusement (when one doesn't think about why helicoptors come to Hopkins).
I've woken to the sound of pump alarm bells too often this AM to try to sleep any longer and so here I am posting. And reflecting on a pretty trying week. In my last post I mentioned, and even made light of, the fevers I was having. Well, a couple turned into several days in a row, with fever coming and going only with the administration of Tylenol. Finally, on Tuesday morning this week I woke up with a fever. One I did not know about before going to bed (for the astute readers) and it had spiked to 103.8 degrees. I was admitted at Hopkins in time for rounds that morning. These fevers, given their intensity, had been pegged for an infection of some sort but . . . all the king's men and all the king's horses couldn't get Russ out of bed and into his regular discourses.
And so we were caught in this loop. Everyone would look at me and my symptoms and say, "he's got an infection . . . somewhere". Everyone would look at the roster of medication I was taking and say, "We've got him covered for viral, bacterial, or fungal infections".
As it turns out, a blood culture taken 5 days ago has now grown out and shows a seemingly signficant infection (given Marla's reaction when I reiterated what little I knew at that point) contained in the lines of my catheter. Easy to treat--yank the catheter out. And so we did, yesterday. But I'm still getting the meds and the fluids and so that means I now have two (stay tuned for tomorrows post where I explain that this statement isn't exactly true) traditional IV ports in my left arm. I am pleased to report that I'm closing in on 24 hours without a fever, I also saw a return in my appetite last night, and I awoke without a headache for the first time in about a week.
But probably the most significant news came during the hunt for the source of the fevers. As various tests were run and crossed off the list, the question came up that perhaps my fever was a result of a recurrence of leukemia in the marrow. To date, even what must be only a few weeks ago, all marrow checks had been clean. But, running out of options they again did a bone marrow biopsy. I learned on Wednesday afternoon that there were leukemic cells in my marrow. In essence, this means that my first attempt at remission has not been successful. And now we are full-steam toward a second attempt. The real handwringing comes with the knowledge that each subsequent attempt comes with less and less chance of achieving remission. Don't ask me numbers. I've forgotten them. However, I don't believe they depicted staggering odds against achieving remission on a second attempt. I choose to remain hopeful.
The comforting news is that the bone marrow administrative processes are behind us. This means that when I achieve remission I will be able to be placed directly into the transplant routine and hopefully we could transplant within days, not weeks. So it seems I will be here at Hopkins for a bit as I believe all of these processes may well bleed (pun intended) into one another. If that is the case, I may have this nice view to myself for a number of weeks while getting chemo and recovering. It is a good one for sitting and thinking. Sitting and thinking is good for blogging. Beware.
As always, thanks for reading:
--Russ.
Friday, May 21, 2010
Dangerous Dichotomy
Good Morning All:
Figured I'd write today and let you know that I'm out of the hospital but I continue to deal with these fevers. To date, I have not had an infection that anyone can find and so the fevers are labeled neutropenic fevers which is doctor-ese for fever-of-unknown-origin.
A couple of nights ago I played a somewhat dangerous game that I thought perhaps might make for interesting reading--you be the judge.
There is one well known, often preached, unflagging rule that the blood cancer patient must live by: take your temperature at home, and if the thermometer ever reads greater than 100.4 you must call the on-call physician. Of course I have done this a few times and the pattern is the same. Since I have no immune system right now, and discretion is the better part of valor, the doctor admits me to the hospital almost as a matter of course. Once in the hospital my fever may, or may not, be reproduced but it is an unwritten rule that I will be monitored to ensure that I am fever-free for 48 hours before I will be released.
After this most recent hospitalization I was put on a pretty intense regimen of antibiotics, etc. and was told the visit the outpatient clinic daily. Wednesday was my first such visit and it was roughly the same as any other visit to the clinic except that they were working in the the administration of 3 IV antibiotics during the appointment.
I didn't feel great going home. I was still very tired from my hospital stay and chalked much of how I felt up to a lack of sleep. Instead of household chores I just curled up on the couch and dozed in and out waiting for Marla to come home with Audrey (Nolan had baseball practice). As the evening went on it became clear that I had a fever. I took my temperature after dinner and it was well beyond the 100.4 threshold. I opted not to call.
But its the rule, right? What if it was something to be worried about? Of course these thoughts went through my head but I also know this: If I take the same set of complaints (fever, chills) with me to the outpatient clinic I am much less likely to get admitted to the hospital. Of course, I wrestled with all the reasons that I should follow THE RULE. I weighed those reasons agains the almost assured return trip to the hospital and decided that I could wait until morning.
Ultimately it all comes down to what I have been rewarded for. So far, adherence to THE RULE has only ever garnered me a hospital stay. These stays cause disruption at home, are expensive, boring, and often fruitless when it comes to finding an infection source. On the other hand, by selectively ignoring THE RULE I have been rewarded by effectively avoiding a hospital stay for a neutropenic fever.
I recognize, of course, that this will not always work in my favor. That failing to follow doctor's orders could have very serious consequences. However, I feel like "they" have forced my hand to at least take into account a number of factors before I give in a call and thereby admit myself to the hospital.
I'm certain that this is not what the team of doctors intend a patient to do but it is what they have established through their actions. The outpatient clinic does a good job of taking into account the patient's desire to stay home and get better at the same time. The Doctors seem to over rely on the inpatient hospital admission and the rules of thum that keep the patient away from family a minimum of two days. I think the doctors could learn much from the outpatient clinic and the focs on the patient's needs and desires. They might find that the patient is more apt to follow the doctor's orders if they did.
As always, thanks for reading.
--Russ.
Figured I'd write today and let you know that I'm out of the hospital but I continue to deal with these fevers. To date, I have not had an infection that anyone can find and so the fevers are labeled neutropenic fevers which is doctor-ese for fever-of-unknown-origin.
A couple of nights ago I played a somewhat dangerous game that I thought perhaps might make for interesting reading--you be the judge.
There is one well known, often preached, unflagging rule that the blood cancer patient must live by: take your temperature at home, and if the thermometer ever reads greater than 100.4 you must call the on-call physician. Of course I have done this a few times and the pattern is the same. Since I have no immune system right now, and discretion is the better part of valor, the doctor admits me to the hospital almost as a matter of course. Once in the hospital my fever may, or may not, be reproduced but it is an unwritten rule that I will be monitored to ensure that I am fever-free for 48 hours before I will be released.
After this most recent hospitalization I was put on a pretty intense regimen of antibiotics, etc. and was told the visit the outpatient clinic daily. Wednesday was my first such visit and it was roughly the same as any other visit to the clinic except that they were working in the the administration of 3 IV antibiotics during the appointment.
I didn't feel great going home. I was still very tired from my hospital stay and chalked much of how I felt up to a lack of sleep. Instead of household chores I just curled up on the couch and dozed in and out waiting for Marla to come home with Audrey (Nolan had baseball practice). As the evening went on it became clear that I had a fever. I took my temperature after dinner and it was well beyond the 100.4 threshold. I opted not to call.
But its the rule, right? What if it was something to be worried about? Of course these thoughts went through my head but I also know this: If I take the same set of complaints (fever, chills) with me to the outpatient clinic I am much less likely to get admitted to the hospital. Of course, I wrestled with all the reasons that I should follow THE RULE. I weighed those reasons agains the almost assured return trip to the hospital and decided that I could wait until morning.
Ultimately it all comes down to what I have been rewarded for. So far, adherence to THE RULE has only ever garnered me a hospital stay. These stays cause disruption at home, are expensive, boring, and often fruitless when it comes to finding an infection source. On the other hand, by selectively ignoring THE RULE I have been rewarded by effectively avoiding a hospital stay for a neutropenic fever.
I recognize, of course, that this will not always work in my favor. That failing to follow doctor's orders could have very serious consequences. However, I feel like "they" have forced my hand to at least take into account a number of factors before I give in a call and thereby admit myself to the hospital.
I'm certain that this is not what the team of doctors intend a patient to do but it is what they have established through their actions. The outpatient clinic does a good job of taking into account the patient's desire to stay home and get better at the same time. The Doctors seem to over rely on the inpatient hospital admission and the rules of thum that keep the patient away from family a minimum of two days. I think the doctors could learn much from the outpatient clinic and the focs on the patient's needs and desires. They might find that the patient is more apt to follow the doctor's orders if they did.
As always, thanks for reading.
--Russ.
Sunday, May 16, 2010
Triumph and Tribulation
Good Morning All:
Well, as the title I have chosen would indicate, I have some good news and some bad news.
I'll start with the bad news as I don't think it is all that bad. I'm typing this post from the hospital. I was admitted last night after I spiked a fever and had some odd pain in my back for a good portion of the day. The fever has since abated and the pain is not as severe as it initially was. The CAT Scan that I got at 3:30 AM apparently was 'boring' (Would you believe that was the doctor's actual words?!). What I don't know is how long I'll be here. I'm hoping that if I'm fever-free for 24 hours they'll cut me loose tomorrow, but no one has said any such thing to me.
These 'blips' are at times frustrating and/or disconcerting. They can be scary as the risk of infection is the greatest danger that I currently face. So every time we go through this there is fair amount of worry and trepidation as I leave the house and plop myself into the hospital: "What is this? Do I have an infection? Could it be serious?" Until I get to the hospital I cannot know and that, of course, is why I make the phone call to the on call doctor instead of ignoring the fever.
The good news comes in form of an update on the bone marrow transplant front. On my last update I let everyone know that I had at least one perfect match. As it turns out, the original 18 10-out-of-10 matches yielded 4 perfect matches when held up to the light of the more strict HLA matching. From there the four matches have been prioritized based on more ancillary criteria and are in the process of being contacted and coordinated with for a bone marrow donation. I have been told that they have been provided timeframes that would enable a transplant for me on either June 9th or June 16th.
I am very fortunate to have four matches. Many individuals in the same circumstance as I have one, or even none. I have 1a, b, c and d. This, of course is exciting news. It means that the treatment I need is very probable to occur in the form that has the greatest chances of success and fewest complications (of those options available to me). That is a relief.
It also means that I've got an upcoming month-long hospitalization that is becoming much more 'real'. I am not at all looking forward to being away from the family for that sort of duration again. As Marla is quick to point out, however, if the transplant is necessary, then the sooner we get started the sooner the hospitalization finishes. I suppose that is a better way of looking at it, but I find it difficult to bring myself around to that angle very often--I get stuck at having to live in the hospital for a month separated from family and friends.
I guess that is about it for now. As always, thanks for reading.
--Russ.
Well, as the title I have chosen would indicate, I have some good news and some bad news.
I'll start with the bad news as I don't think it is all that bad. I'm typing this post from the hospital. I was admitted last night after I spiked a fever and had some odd pain in my back for a good portion of the day. The fever has since abated and the pain is not as severe as it initially was. The CAT Scan that I got at 3:30 AM apparently was 'boring' (Would you believe that was the doctor's actual words?!). What I don't know is how long I'll be here. I'm hoping that if I'm fever-free for 24 hours they'll cut me loose tomorrow, but no one has said any such thing to me.
These 'blips' are at times frustrating and/or disconcerting. They can be scary as the risk of infection is the greatest danger that I currently face. So every time we go through this there is fair amount of worry and trepidation as I leave the house and plop myself into the hospital: "What is this? Do I have an infection? Could it be serious?" Until I get to the hospital I cannot know and that, of course, is why I make the phone call to the on call doctor instead of ignoring the fever.
The good news comes in form of an update on the bone marrow transplant front. On my last update I let everyone know that I had at least one perfect match. As it turns out, the original 18 10-out-of-10 matches yielded 4 perfect matches when held up to the light of the more strict HLA matching. From there the four matches have been prioritized based on more ancillary criteria and are in the process of being contacted and coordinated with for a bone marrow donation. I have been told that they have been provided timeframes that would enable a transplant for me on either June 9th or June 16th.
I am very fortunate to have four matches. Many individuals in the same circumstance as I have one, or even none. I have 1a, b, c and d. This, of course is exciting news. It means that the treatment I need is very probable to occur in the form that has the greatest chances of success and fewest complications (of those options available to me). That is a relief.
It also means that I've got an upcoming month-long hospitalization that is becoming much more 'real'. I am not at all looking forward to being away from the family for that sort of duration again. As Marla is quick to point out, however, if the transplant is necessary, then the sooner we get started the sooner the hospitalization finishes. I suppose that is a better way of looking at it, but I find it difficult to bring myself around to that angle very often--I get stuck at having to live in the hospital for a month separated from family and friends.
I guess that is about it for now. As always, thanks for reading.
--Russ.
Saturday, May 8, 2010
Update and Happy Mother's Day
Happy Weekend All:
For all my lamenting about 'forced retirement', I am happy for the weekends as well. The outpatient clinic does what they can to give patients the weekend 'off' and I am no exception. But during the week I am trying to work what hours I can and still make the trip to Hopkins a minimum of three times per week. I usually get to Hopkins by 10:00 or a little after for my 10:30 appointment. This requires me to leave my house by about 8:30. I drive to my parent's house in Silver Spring and they take me (by rule I have to be driven to Hopkins) the rest of the way. Typically I am not home until 5:00 or even later. Last night I didn't get home until closer to 8:00 but that was partly because I was leaving Hopkins around my family's dinner time so my parents and I did carry-out at their place before I drove the rest of the way home. This being a patient is at least a close to a full time job in, and of, itself. So I like the weekends too, where I can 'relax'.
So, I have already helped Nolan with a big chunk of major biographical report this morning, started the laundry focusing on the loads that will ensure that Nolan's uniform is ready for tomorrow's baseball game, done some minor plumbing by replacing the flusher handle (nothing with the 'dirty' part of the toilet, though some might argue any part of the toilet is perhaps too dirty for someone with no immune system to touch), and with Audrey's help have started picking up around the house to get it ready for the little Mother's Day shindig that we'll have here around Nolan's baseball game. I'm taking a quick breather as the last bits of my antibiotics drip through my catheter and figured I'm make a quick post.
The rest of this afternoon I will continue to clean and do laundry. I'll also pay the bills and do some work wiping clean the hard drive on a computer that we intend to donate to Audrey and Nolan's school. I am limited in how I can help, but truly, this level of activity is 'relaxing' to me. While on the face it sounds nice to lounge around in bed or in a recliner all day, at Hopkins it is by no means relaxing and sometimes it can be downright tiring.
Just a quick update on the search for a bone marrow donor. I believe that when I last posted on this topic I indicated that a very promising number of 10-out-of-10 matches had been found. The second, more detailed level of genetic matching is well underway on those candidates and there has been some good news. At least one of those matches has been determined to be a hematological twin to me. It wasn't really presented that way to me, of course, but from what I can understand it seems like this one individual matches in every way that the doctor's could hope for. It also sounded at the time that there could be a couple of other such 'twins' but that they were a day or two away from having those confirmed as well. Needless to say it is a relief that we're now talking about rank ordering matches instead of wondering if such matches are out there. My understanding is that the process of actually contacting these donors to see if they are available and still eligible to donate has begun or will begin soon. The doctors continue to keep the transplant options open. The choice among the options depend on several factors including when my counts return (also a determinant on if/when I return to Hopkins as an in-patient for a second round of chemo), the presence or absence of leukemia, and the final speed and success with which the Match-Unrelated Donorship (MUD) can be arranged.
Finally, I'd like to say Happy Mother's Day to the Moms. Of particular note (since this is MY forum) I'd like to single out my mom, Linda French; my wife and the mother of my kids, Marla French; my mother-in-law, Lannie Potts; my cousin and brand new mom, Jennifer Brown; and my grandmother, Geraldine Shelley. And given the subject matter of this blog I feel compelled to extend the same warm wishes to some other "mothers" (not actually my mother, but in some cases mothers of others--I just finished reading a Dr. Seuss book with Audrey!) who have been pretty regular in checking in and/or sending well wishes. They include: coworkers Gloria Loudermilk and Marie Slaughter (and the rest of the SPS Office), Jan Pallas Dudley (and the rest of the Recruitment Services group), Venitia Lamour (and the cancer support group at work that I haven't gotten a chance to meet with!), and Ronie Nieva (fellow Hopkins goer and blogger), Terri Annis, Martha Berlin, and Robin Stearn (and the rest of the Field HR team); friends Wendy Bailey, Denise Conway, Stephanie Reeve, and Michele Allan for keeping Marla sane and for pitching in, the moms of the baseball team for their support of the team and for the support they've shown me, and the many "moms" that have checked in from Ascension (Angela Hight-Walker and Sue Stief come to mind, Reverand Randy: do you mind being a mom?), Hughes (Rebecca Olmstead, certainly), Candlewood (Mrs. Bednar, Ornstein, Russell, Stayeas, and Zador for their support of Nolan and Audrey), and the many "moms" that support Marla daily at Human Genome Sciences, many of whom I have met a few times but couldn't reliably be counted on to come up with all the names.
Happy Mother's Day, and as always, thanks for reading.
--Russ.
For all my lamenting about 'forced retirement', I am happy for the weekends as well. The outpatient clinic does what they can to give patients the weekend 'off' and I am no exception. But during the week I am trying to work what hours I can and still make the trip to Hopkins a minimum of three times per week. I usually get to Hopkins by 10:00 or a little after for my 10:30 appointment. This requires me to leave my house by about 8:30. I drive to my parent's house in Silver Spring and they take me (by rule I have to be driven to Hopkins) the rest of the way. Typically I am not home until 5:00 or even later. Last night I didn't get home until closer to 8:00 but that was partly because I was leaving Hopkins around my family's dinner time so my parents and I did carry-out at their place before I drove the rest of the way home. This being a patient is at least a close to a full time job in, and of, itself. So I like the weekends too, where I can 'relax'.
So, I have already helped Nolan with a big chunk of major biographical report this morning, started the laundry focusing on the loads that will ensure that Nolan's uniform is ready for tomorrow's baseball game, done some minor plumbing by replacing the flusher handle (nothing with the 'dirty' part of the toilet, though some might argue any part of the toilet is perhaps too dirty for someone with no immune system to touch), and with Audrey's help have started picking up around the house to get it ready for the little Mother's Day shindig that we'll have here around Nolan's baseball game. I'm taking a quick breather as the last bits of my antibiotics drip through my catheter and figured I'm make a quick post.
The rest of this afternoon I will continue to clean and do laundry. I'll also pay the bills and do some work wiping clean the hard drive on a computer that we intend to donate to Audrey and Nolan's school. I am limited in how I can help, but truly, this level of activity is 'relaxing' to me. While on the face it sounds nice to lounge around in bed or in a recliner all day, at Hopkins it is by no means relaxing and sometimes it can be downright tiring.
Just a quick update on the search for a bone marrow donor. I believe that when I last posted on this topic I indicated that a very promising number of 10-out-of-10 matches had been found. The second, more detailed level of genetic matching is well underway on those candidates and there has been some good news. At least one of those matches has been determined to be a hematological twin to me. It wasn't really presented that way to me, of course, but from what I can understand it seems like this one individual matches in every way that the doctor's could hope for. It also sounded at the time that there could be a couple of other such 'twins' but that they were a day or two away from having those confirmed as well. Needless to say it is a relief that we're now talking about rank ordering matches instead of wondering if such matches are out there. My understanding is that the process of actually contacting these donors to see if they are available and still eligible to donate has begun or will begin soon. The doctors continue to keep the transplant options open. The choice among the options depend on several factors including when my counts return (also a determinant on if/when I return to Hopkins as an in-patient for a second round of chemo), the presence or absence of leukemia, and the final speed and success with which the Match-Unrelated Donorship (MUD) can be arranged.
Finally, I'd like to say Happy Mother's Day to the Moms. Of particular note (since this is MY forum) I'd like to single out my mom, Linda French; my wife and the mother of my kids, Marla French; my mother-in-law, Lannie Potts; my cousin and brand new mom, Jennifer Brown; and my grandmother, Geraldine Shelley. And given the subject matter of this blog I feel compelled to extend the same warm wishes to some other "mothers" (not actually my mother, but in some cases mothers of others--I just finished reading a Dr. Seuss book with Audrey!) who have been pretty regular in checking in and/or sending well wishes. They include: coworkers Gloria Loudermilk and Marie Slaughter (and the rest of the SPS Office), Jan Pallas Dudley (and the rest of the Recruitment Services group), Venitia Lamour (and the cancer support group at work that I haven't gotten a chance to meet with!), and Ronie Nieva (fellow Hopkins goer and blogger), Terri Annis, Martha Berlin, and Robin Stearn (and the rest of the Field HR team); friends Wendy Bailey, Denise Conway, Stephanie Reeve, and Michele Allan for keeping Marla sane and for pitching in, the moms of the baseball team for their support of the team and for the support they've shown me, and the many "moms" that have checked in from Ascension (Angela Hight-Walker and Sue Stief come to mind, Reverand Randy: do you mind being a mom?), Hughes (Rebecca Olmstead, certainly), Candlewood (Mrs. Bednar, Ornstein, Russell, Stayeas, and Zador for their support of Nolan and Audrey), and the many "moms" that support Marla daily at Human Genome Sciences, many of whom I have met a few times but couldn't reliably be counted on to come up with all the names.
Happy Mother's Day, and as always, thanks for reading.
--Russ.
Wednesday, May 5, 2010
Some just try harder
There is a series of commercials that have been produced for Avis Car Rental where the customer would be mistreated in some awful, yet humorous way and the announcer would say something to the effect of, "ever get the feeling that they stopped trying?" By comparison there is a scene where a customer is warmly greeted and taken care of by the Avis Customer Service Rep. The viewer is then left with Avis' slogan, "We try harder."
I've always enjoyed these commercials. They exemplify the kind of positive and frighteningly negative customer service encounters we have all had as we go grocery shopping, fly on an airline, or yes, even rent a car. "There is more truth said in jest . . ." as the saying goes.
The "We try harder" part is perhaps a bit hokey and I am certain that the annals of car rental lore are litttered with customers who would beg to differ on Avis' assertion based on their own personal experience. But it is an interesting statement to put yourself, as a company, on the hook for and I commend Avis for trying. What they are selling, in truth, is the individual effort given by individual employees on each transaction--a tall order. Anyone who has supervised individuals would certainly balk at guaranteeing such a thing.
As an HR professional I really enjoy observing people in their jobs. Do they enjoy it? Does it seem like a good fit, or are they collecting a paycheck? What is behind the flip comments about the supervisor? I naturally get a chance to endulge this penchant of mine while at Hopkins. I get to watch Nurses, Clinical Assistants, Support Assistants, and other staffmembers of the hospital perform their duties as they relate to me and others.
I'm happy to report that these professionals seem to be like everyone else. Some are motivated by what they do or at least perform their duties with enough zeal and vigor to convince me. Others, meander through the day doing enough to remain employed a little longer and little else.
Sometimes we think of healthcare professionals as automatically being intrinsically motivated to do what they do. I'm here to tell you that there are plenty who are. For example, there is the Clinical Assistant who went well beyond her duties of taking vital signs and collecting samples of various types to learn about wound care so that she could better help cancer patients heal from surgeries, or other sores they might acquire during treatment. She personally took the challenge of rehabilitating the skin on my neck that had been iritated and even removed from the adhesives when I had a central line placed in my neck. After a few days of her care my neck didn't even look sore.
Or the snack cart attendant . . . the old one used to ask whether the patients would like a snack from the snack cart as she sprinted through the outpatient unit. You could call after her if you were interested but it was just as likely that she would be gone before you could get the words out and you had to try guess what she had. The new attendant that has been around for just a couple of weeks slowly brings the snacks around on a try, shows you what he has, and asks each individual patient if they would like a snack. I don't know what the first one gained in her speed but I'm certain she didn't give out many snacks. Even though I don't often take a snack I appreciate the new attendant more--I feel taken care of.
Nurses aren't immune. I might think of them as highly skilled professionals but perceptions of their skill should not be confused with the very evident dichotomy that some work for the patient and others work because they have to, nursing the chosen profession. For every nurse that knocks themselves out to get my transfusions done in rapid order, there is another who gives me a cup of pills to swallow and instructs my caregiver to get up and go get the water to wash them down.
During one conversation while I was an inpatient, one fairly new nurse confessed to me that this was her first real nursing job and that she was about 5 months into it. She happened to have been assigned to me 3 days in a row and I asked her a lot about her career choice, her job search, etc. She even admitted at different points to being nervous with the amount of responsibility patient care requires and a desire for her patients to think that she's a good nurse. While she was not the most skilled or knowledgeable nurse I had during this time she may have been among the best--she tried harder, and I told her so.
Having spent a good portion of my career matching people to positions, I have come to realize that making a good match requires no small amount of effort. I have also learned that taking shortcuts (AKA, not trying harder) proves counterproductive in the long run as I work to replace the previous poor hire. I have also come to recognize when a good match has been made--and I have to say that I think Avis has it right. When a good match between person and position has been made it looks like they just try harder. Conversely, a poor match of person and position seems to fall prey to over-reliance on beaurocracy, dodging of responsibility, or just a general malaise in the performance of job duties--all things that may well be the object of humor in the Avis commercials.
So, as I walk out of Hopkins for today I will reflect on the care I've been given and the interactions I've had. A welcoming and fast CA who has been on the job for decades (compared to the one I had on Monday that started grousing and pointing out to me the coworkers that 'spy' on her), a nurse who is clearly knowledgeable but takes forever to get around to her patients, and even the parking attendant who mumbles a greeting, whose eyes seem to always be at half mast, and who takes a surprisingly long time to punch a few buttons and to scan a parking ticket. Who of these were good hires, and who are just individuals in a job? I think I can spot 'em a mile away.
Each of these individuals are related to my care as a cancer patient. Some care and exemplify this by trying harder to make things better. Others clearly do not. I think the balance of those interactions lead a patient to a summation of their experience and an assessment of the care they have received. Hospitals, Hopkins included, might do well to adopt Avis' slogan and strive to back it up. Heh! I wonder if the recruiters at Hopkins are ready for THAT challenge--they'd have to be the first to try harder!
As always, thanks for reading,
--Russ.
PS - recent tests continue to show an absence of leukemia and absolutely no immune system. As of yesterday I was being told that a Bone Marrow Transplant might take place in 4 - 8 weeks with several factors coming into play in how this shakes out. Certainly I'll keep everyone posted as this process develops further.
I've always enjoyed these commercials. They exemplify the kind of positive and frighteningly negative customer service encounters we have all had as we go grocery shopping, fly on an airline, or yes, even rent a car. "There is more truth said in jest . . ." as the saying goes.
The "We try harder" part is perhaps a bit hokey and I am certain that the annals of car rental lore are litttered with customers who would beg to differ on Avis' assertion based on their own personal experience. But it is an interesting statement to put yourself, as a company, on the hook for and I commend Avis for trying. What they are selling, in truth, is the individual effort given by individual employees on each transaction--a tall order. Anyone who has supervised individuals would certainly balk at guaranteeing such a thing.
As an HR professional I really enjoy observing people in their jobs. Do they enjoy it? Does it seem like a good fit, or are they collecting a paycheck? What is behind the flip comments about the supervisor? I naturally get a chance to endulge this penchant of mine while at Hopkins. I get to watch Nurses, Clinical Assistants, Support Assistants, and other staffmembers of the hospital perform their duties as they relate to me and others.
I'm happy to report that these professionals seem to be like everyone else. Some are motivated by what they do or at least perform their duties with enough zeal and vigor to convince me. Others, meander through the day doing enough to remain employed a little longer and little else.
Sometimes we think of healthcare professionals as automatically being intrinsically motivated to do what they do. I'm here to tell you that there are plenty who are. For example, there is the Clinical Assistant who went well beyond her duties of taking vital signs and collecting samples of various types to learn about wound care so that she could better help cancer patients heal from surgeries, or other sores they might acquire during treatment. She personally took the challenge of rehabilitating the skin on my neck that had been iritated and even removed from the adhesives when I had a central line placed in my neck. After a few days of her care my neck didn't even look sore.
Or the snack cart attendant . . . the old one used to ask whether the patients would like a snack from the snack cart as she sprinted through the outpatient unit. You could call after her if you were interested but it was just as likely that she would be gone before you could get the words out and you had to try guess what she had. The new attendant that has been around for just a couple of weeks slowly brings the snacks around on a try, shows you what he has, and asks each individual patient if they would like a snack. I don't know what the first one gained in her speed but I'm certain she didn't give out many snacks. Even though I don't often take a snack I appreciate the new attendant more--I feel taken care of.
Nurses aren't immune. I might think of them as highly skilled professionals but perceptions of their skill should not be confused with the very evident dichotomy that some work for the patient and others work because they have to, nursing the chosen profession. For every nurse that knocks themselves out to get my transfusions done in rapid order, there is another who gives me a cup of pills to swallow and instructs my caregiver to get up and go get the water to wash them down.
During one conversation while I was an inpatient, one fairly new nurse confessed to me that this was her first real nursing job and that she was about 5 months into it. She happened to have been assigned to me 3 days in a row and I asked her a lot about her career choice, her job search, etc. She even admitted at different points to being nervous with the amount of responsibility patient care requires and a desire for her patients to think that she's a good nurse. While she was not the most skilled or knowledgeable nurse I had during this time she may have been among the best--she tried harder, and I told her so.
Having spent a good portion of my career matching people to positions, I have come to realize that making a good match requires no small amount of effort. I have also learned that taking shortcuts (AKA, not trying harder) proves counterproductive in the long run as I work to replace the previous poor hire. I have also come to recognize when a good match has been made--and I have to say that I think Avis has it right. When a good match between person and position has been made it looks like they just try harder. Conversely, a poor match of person and position seems to fall prey to over-reliance on beaurocracy, dodging of responsibility, or just a general malaise in the performance of job duties--all things that may well be the object of humor in the Avis commercials.
So, as I walk out of Hopkins for today I will reflect on the care I've been given and the interactions I've had. A welcoming and fast CA who has been on the job for decades (compared to the one I had on Monday that started grousing and pointing out to me the coworkers that 'spy' on her), a nurse who is clearly knowledgeable but takes forever to get around to her patients, and even the parking attendant who mumbles a greeting, whose eyes seem to always be at half mast, and who takes a surprisingly long time to punch a few buttons and to scan a parking ticket. Who of these were good hires, and who are just individuals in a job? I think I can spot 'em a mile away.
Each of these individuals are related to my care as a cancer patient. Some care and exemplify this by trying harder to make things better. Others clearly do not. I think the balance of those interactions lead a patient to a summation of their experience and an assessment of the care they have received. Hospitals, Hopkins included, might do well to adopt Avis' slogan and strive to back it up. Heh! I wonder if the recruiters at Hopkins are ready for THAT challenge--they'd have to be the first to try harder!
As always, thanks for reading,
--Russ.
PS - recent tests continue to show an absence of leukemia and absolutely no immune system. As of yesterday I was being told that a Bone Marrow Transplant might take place in 4 - 8 weeks with several factors coming into play in how this shakes out. Certainly I'll keep everyone posted as this process develops further.
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