Good Morning All:
For two years now (off-and-on) I have posted the progress and the setbacks of my ongoing treatment for Acute Lymphoblastic Lymphoma/Leukemia. I have interjected humor where I saw it and expressed worry as I felt it.
It is not lost on me that I have not posted recently and I'd like to share now why. One week ago the very tone and tenor of my treatment was changed. In a meeting with an attending physician regarding the delays in my receiving the treatments from the clinical trial in which I was enrolled, we received stunning news--I was no longer able to physically withstand active cancer treatments, that no further treatments were to be recommended, and that I ought to start focusing on quality of life--what remains of it. The cancer was still there and would ultimately "win."
It took Marla and I easily three full days to digest and to begin dealing with this information. How do we tell the kids? How do we tell others? Is this where one calls an organization like Hospice (and if so, why doesn't someone come out and say so).
After subsequent meetings with doctors and staff at Hopkins a plan is beginning to crystallize for dealing with the ongoing physical decline that I will assuredly have to endure.
I do not know the extent to which I will have the energy or desire to continue the blogs--I think we'll have to wait and see on that. I do monitor the responses to my posts and this one won't be any different.
A question we anticipate relates to visitors. There are many emotional and practical considerations with regard to the frequency, duration, and timing of any visits and so I know I speak for Marla when I ask for your indulgence as we sort through these very new issues.
Finally, I thank you for all your engagement, encouragement and laughs. I cannot ask for any better support network than the one I have had behind me all along.
As always, thanks for reading.
--Russ.
Monday, August 23, 2010
Monday, August 9, 2010
Oh, those red herrings . . .
Good Morning All:
I can remember times during my professional career where it all seemed so clear. I'd drive to work thinking over the 3 to 5 items I was working on and how I'd approach them. A calming sense of clarity on the bigger picture made the rest of the drive, getting into the office, turning on the PC a veritable walk in the clouds. And then . . .
A coworker leans in the doorway and informs you of a brewing fire. Your boss asks you to take on a new project--meeting's at 10:00. And there ends your chance of being "The Machine" that you envisioned while walking in the clouds.
Sorry for the delay since my last post. The administration off the actual drug occurs on Mondays. The second dose hasn't been as kind and again, omitting the gory details, has really taken a toll. So the team and I have chosen to skip the third dose. This will allow my strength to recover.
It is funny how at times doctors can fall prey to a red herring. A couple weeks ago during a routine platelet transfusions hives started breaking out on my arm, legs, and torso. They spent 3 days trying to figure out (pending the results of one outstanding biopsy) that it was related to the transfusion
I can remember times during my professional career where it all seemed so clear. I'd drive to work thinking over the 3 to 5 items I was working on and how I'd approach them. A calming sense of clarity on the bigger picture made the rest of the drive, getting into the office, turning on the PC a veritable walk in the clouds. And then . . .
A coworker leans in the doorway and informs you of a brewing fire. Your boss asks you to take on a new project--meeting's at 10:00. And there ends your chance of being "The Machine" that you envisioned while walking in the clouds.
Sorry for the delay since my last post. The administration off the actual drug occurs on Mondays. The second dose hasn't been as kind and again, omitting the gory details, has really taken a toll. So the team and I have chosen to skip the third dose. This will allow my strength to recover.
It is funny how at times doctors can fall prey to a red herring. A couple weeks ago during a routine platelet transfusions hives started breaking out on my arm, legs, and torso. They spent 3 days trying to figure out (pending the results of one outstanding biopsy) that it was related to the transfusion
The classic, and I laugh now as I type from home, was when I went into the hospital with a high fever. They kept me for 3 weeks trying to figure out what the source of the fevers were but also with the full knowledge that this disease caused fevers too. Curiously no full body scans were ever run to try an find a malingering infection. Hundreds of tests, cultures, a few CT scans all came back with zero. They threw up their hands, said, must be the disease, and released me.
I had a nice recompense of this earlier time just recently when I was admitted for dehydration. The resident on rounds asked me a question then opened the floor. I asked what I was here for and he replied "to find the source of your fevers." I told him that was not the likely answer. Sure enough the rounds team comes along, and the attending's plans were for the restoration of fluid and nutrients that might have been lost.
This has been my frustration from the beginning. There is little more I can say on this topic that hasn't appeared elsewhere on my blog--So I won't belabor it. I recall pictures of herds of buffalo being driven over cliffs by American Indians? My bet is that some of those buffalo decided to make a left turn and run for it. I bet they were fat content buffaloes.
As always thanks for reading.
--Russ
Tuesday, July 27, 2010
First Dose Update
Good Afternoon all:
I was originally hoping to write a post proclaiming that the new protocol started yesterday but, man, it was busy. From about 9:00 to the time we left, 6:15, there was a never ending stream of people poking, prodding, giving me this medicine, hanging that bag of fluid (or medicine).In the end I had very little time to do anything (except sleep off what I think might have been 3 doses of Benadryl).
So, the medicine from the clinical trial has been infused. I now have super human strength, the ability to lift comically heavy things like freight trains, and can scatter molecules (yours or mine) to the four winds.
Oh, that might have been the dream I had last night. As I report on the progress of this new trial I will try to maintain an even mix of both reality and optimism.
Clearly, the first day after receiving my first weekly dose cannot yield much but I can report the following:
1. The side effect that the consent form showed as effecting 100% of patients did not waste any time finding its way to me. (Don't ask, you'd rather not know)
2. My white blood cell counts today rose pretty dramatically and were higher since March by my Dad's reckoning. Still no neutrophils, but the number of white blood cells is a promising sign.
3. Are my fevers under control,or closer to it? I went to bed last night with a borderline fever but not hot enough for Tylenol. I checked throughout the night and my temperature dropped instead of continuing its inevitable march upward.
I've entered this trial envisioning it like a baseball game where someone has handed me a new bat, far improved from the one I retained from High School. With a wink and a nod they've told me to "give this one a try". It feels nice in my hands and I get a satisfying whoosh when I swing it. I was never much of a homerun hitter growing up. Perhaps that changes now.
As always, thanks for reading.
--Russ.
I was originally hoping to write a post proclaiming that the new protocol started yesterday but, man, it was busy. From about 9:00 to the time we left, 6:15, there was a never ending stream of people poking, prodding, giving me this medicine, hanging that bag of fluid (or medicine).In the end I had very little time to do anything (except sleep off what I think might have been 3 doses of Benadryl).
So, the medicine from the clinical trial has been infused. I now have super human strength, the ability to lift comically heavy things like freight trains, and can scatter molecules (yours or mine) to the four winds.
Oh, that might have been the dream I had last night. As I report on the progress of this new trial I will try to maintain an even mix of both reality and optimism.
Clearly, the first day after receiving my first weekly dose cannot yield much but I can report the following:
1. The side effect that the consent form showed as effecting 100% of patients did not waste any time finding its way to me. (Don't ask, you'd rather not know)
2. My white blood cell counts today rose pretty dramatically and were higher since March by my Dad's reckoning. Still no neutrophils, but the number of white blood cells is a promising sign.
3. Are my fevers under control,or closer to it? I went to bed last night with a borderline fever but not hot enough for Tylenol. I checked throughout the night and my temperature dropped instead of continuing its inevitable march upward.
I've entered this trial envisioning it like a baseball game where someone has handed me a new bat, far improved from the one I retained from High School. With a wink and a nod they've told me to "give this one a try". It feels nice in my hands and I get a satisfying whoosh when I swing it. I was never much of a homerun hitter growing up. Perhaps that changes now.
As always, thanks for reading.
--Russ.
Tuesday, July 20, 2010
Try as I might
Good Afternoon All:
This post has been brewing for a while. I have made a very important discovery. Try as I might I cannot find the word 'fun' or even a close synonym in the letters of LEUKEMIA. MILK with chocolate added is pretty fun, I suppose. I have fond memories of riding a MULE in the grand canyon. But these aren't synonyms and so I'm left to conclude that there simply isn't any FUN in LEUKEMIA.
My folks have a pool at their home. I've always loved to swim and with two kids getting better and more confident in the pool I would simply love to play with them in the pool. Instead I am relegated to watch because I cannot get my catheter wet. This past weekend it was suggested that I get in the pool just up to my waist. I know me, however, the temptation to splash, squirt, toss my kids would overcome me and now I'd be introducing bacterial risk into an already risky situation. I am certainly happy to watch and was proud to see my son really becoming strong in the water and my daughter conquering the deep end. But, oh, how the experience could have been different.
The weekend it also seemed that each and every time we would be planning to visit someone, or someone visit us, I would spike a fever. Instead of enjoying the company I was left to pop some Tylenol (a MAJOR coup for a patient in my position, I can self dose with pain narcotics easier than I can get physician approval for a fever suppressant) and deal with all that goes with having a fever (chills, etc.) and then the fever breaking (sweating, etc.) before I was really 'presentable' to outsiders.
This week was to be our family's vacation to the beach. The kids look forward to the surf and the rides at night. Marla and I look forward to relaxing a bit and some nice dinners out. This year our easy ten days of FUN turned into four days that will be fun for those that can go only after a lot of complication and discussion.
I've been very aware of a change in my mood recently. I have taken up a favorite perch in our house on the same couch that Bella has claimed as her own. I can see why she likes it. The couch is next to the window but still somewhat central in the house. I find myself sitting there and thinking a lot. Much of what I think about is introspection. Why do I feel the way I feel? How do I get back to 'my own' state of mind?
I have been reminded that my attitude is important. I think there is concern both from my family and from my physicians that I am not 'in the same place" I was when this process began. Part of me would respond that I am not and how could I be? But after some introspection I think I see that my disappointment for what is does not have to color my optimism for the future.
This week I will start a new protocol and I am optimistic. I feel like the doctors have listened to me and found a course that is a change from the traditional chemotherapy. Instead I will be part of a clinical trial of the newer generation of 'targeted' drugs for cancer cells. In theory this drug will bind to a critical spot on a cancer cell and limit its functioning and ability to replicate. It is a different approach, it will be easy to assess its success or failure in the short term, shouldn't beat up my body the way the most recent chemo regimen have, and . . . it just might work.
So for all those who have expressed concern regarding my mood: you were justified. I was wrestling with some things. I believe I have come out of that now, or will soon. I would like to pass along that my medical team is still hopeful that I can have the full, matched-unrelated donor transplant or at the least another option using marrow from one of my parents. I have guaranteed my medical team that if they can get me to a transplant that I will take it the rest of the way to the cure.
So that is where I am leaving it. Being home is a blessing but it also serves as a reminder to all of us at home how things have changed or been sacrificed out of the necessity of the situation.
As always, thanks for reading.
--Russ.
This post has been brewing for a while. I have made a very important discovery. Try as I might I cannot find the word 'fun' or even a close synonym in the letters of LEUKEMIA. MILK with chocolate added is pretty fun, I suppose. I have fond memories of riding a MULE in the grand canyon. But these aren't synonyms and so I'm left to conclude that there simply isn't any FUN in LEUKEMIA.
My folks have a pool at their home. I've always loved to swim and with two kids getting better and more confident in the pool I would simply love to play with them in the pool. Instead I am relegated to watch because I cannot get my catheter wet. This past weekend it was suggested that I get in the pool just up to my waist. I know me, however, the temptation to splash, squirt, toss my kids would overcome me and now I'd be introducing bacterial risk into an already risky situation. I am certainly happy to watch and was proud to see my son really becoming strong in the water and my daughter conquering the deep end. But, oh, how the experience could have been different.
The weekend it also seemed that each and every time we would be planning to visit someone, or someone visit us, I would spike a fever. Instead of enjoying the company I was left to pop some Tylenol (a MAJOR coup for a patient in my position, I can self dose with pain narcotics easier than I can get physician approval for a fever suppressant) and deal with all that goes with having a fever (chills, etc.) and then the fever breaking (sweating, etc.) before I was really 'presentable' to outsiders.
This week was to be our family's vacation to the beach. The kids look forward to the surf and the rides at night. Marla and I look forward to relaxing a bit and some nice dinners out. This year our easy ten days of FUN turned into four days that will be fun for those that can go only after a lot of complication and discussion.
I've been very aware of a change in my mood recently. I have taken up a favorite perch in our house on the same couch that Bella has claimed as her own. I can see why she likes it. The couch is next to the window but still somewhat central in the house. I find myself sitting there and thinking a lot. Much of what I think about is introspection. Why do I feel the way I feel? How do I get back to 'my own' state of mind?
I have been reminded that my attitude is important. I think there is concern both from my family and from my physicians that I am not 'in the same place" I was when this process began. Part of me would respond that I am not and how could I be? But after some introspection I think I see that my disappointment for what is does not have to color my optimism for the future.
This week I will start a new protocol and I am optimistic. I feel like the doctors have listened to me and found a course that is a change from the traditional chemotherapy. Instead I will be part of a clinical trial of the newer generation of 'targeted' drugs for cancer cells. In theory this drug will bind to a critical spot on a cancer cell and limit its functioning and ability to replicate. It is a different approach, it will be easy to assess its success or failure in the short term, shouldn't beat up my body the way the most recent chemo regimen have, and . . . it just might work.
So for all those who have expressed concern regarding my mood: you were justified. I was wrestling with some things. I believe I have come out of that now, or will soon. I would like to pass along that my medical team is still hopeful that I can have the full, matched-unrelated donor transplant or at the least another option using marrow from one of my parents. I have guaranteed my medical team that if they can get me to a transplant that I will take it the rest of the way to the cure.
So that is where I am leaving it. Being home is a blessing but it also serves as a reminder to all of us at home how things have changed or been sacrificed out of the necessity of the situation.
As always, thanks for reading.
--Russ.
Monday, July 12, 2010
Update
Good Morning all:
I'm typing this post from Hopkins but as an outpatient. As it turns out the decision was made late on Friday to go ahead and release me from the hospital and move me to outpatient care.
I had a bone marrow biopsy Friday that showed a continued presence of leukemia in my marrow, and having ruled out all other infection sources, the doctors were content to pin the fevers on the disease. So, I had to deal with the bad news that the chemo didn't continue to kick the disease out of my body after the preliminary biopsy showed cancer in the marrow. At the same time I had to stifle my enthusiasm for returning home.
The biopsy is truly bad news. Each failed treatment becomes problematic. The doctors are looking at next options and based on some test results that might not be available until next week a decision along these lines will remain on hold. In the meantime I have challenged the Oncology team to do what, in my opinion, they have neglected to do since I relapsed--buy my body some time to recover its counts. It seems that the cancer is recovering faster than the real me, and ultimately crowds out any opportunity for new, healthy marrow to develop. I intend to be dogged on this point. I think I have hit my mark so far as I got a glimmer of recognition when I mentioned this point to my Outpatient Nurse Practitioner this morning.
On the positive end I am home. I've lost weight, a fair amount of muscle I might guess, but I feel good. Over the weekend I successfully assembled Audrey's new bicycle (Mommy and Daddy's gift for her 6th birthday), watched the kids enjoy bikes and skateboards with the neighborhood kids all while coolly sitting under the shade of a tree with Bella sitting calmly at my side. We even joined some neighbors for dinner last night. And best of all I got to tuck my kids into bed each night and spend some quiet moments with Marla.
Of course, none of this is possible as an inpatient and so I feel glad to have this opportunity even if it comes as a result of some distressing news. As I know more about the next treatment I will update here. Also if inspiration strikes on a more philosophical post you can expect to find it here.
As always, thanks for reading.
--Russ.
I'm typing this post from Hopkins but as an outpatient. As it turns out the decision was made late on Friday to go ahead and release me from the hospital and move me to outpatient care.
I had a bone marrow biopsy Friday that showed a continued presence of leukemia in my marrow, and having ruled out all other infection sources, the doctors were content to pin the fevers on the disease. So, I had to deal with the bad news that the chemo didn't continue to kick the disease out of my body after the preliminary biopsy showed cancer in the marrow. At the same time I had to stifle my enthusiasm for returning home.
The biopsy is truly bad news. Each failed treatment becomes problematic. The doctors are looking at next options and based on some test results that might not be available until next week a decision along these lines will remain on hold. In the meantime I have challenged the Oncology team to do what, in my opinion, they have neglected to do since I relapsed--buy my body some time to recover its counts. It seems that the cancer is recovering faster than the real me, and ultimately crowds out any opportunity for new, healthy marrow to develop. I intend to be dogged on this point. I think I have hit my mark so far as I got a glimmer of recognition when I mentioned this point to my Outpatient Nurse Practitioner this morning.
On the positive end I am home. I've lost weight, a fair amount of muscle I might guess, but I feel good. Over the weekend I successfully assembled Audrey's new bicycle (Mommy and Daddy's gift for her 6th birthday), watched the kids enjoy bikes and skateboards with the neighborhood kids all while coolly sitting under the shade of a tree with Bella sitting calmly at my side. We even joined some neighbors for dinner last night. And best of all I got to tuck my kids into bed each night and spend some quiet moments with Marla.
Of course, none of this is possible as an inpatient and so I feel glad to have this opportunity even if it comes as a result of some distressing news. As I know more about the next treatment I will update here. Also if inspiration strikes on a more philosophical post you can expect to find it here.
As always, thanks for reading.
--Russ.
Monday, July 5, 2010
An update and a silver lining
Good Morning All:
Yesterday morning I was 'set off' by the routine 7:30 visit from the Intern preceding rounds. She greeted me by saying, "Well we're going to try and find out what is causing these fevers today." Immediately two questions flashed in my mind. Sarcastically, and actually never stated was: . . . and so what have you been doing over the past week?
The question I did ask was, "Oh? What are we going to do different today?" Her response astounded me. She replied "Nothing. We'll just monitor you." After a brief discussion where I confirmed that I understood the medical concerns with letting me out of the hospital with a pattern of daily fevers, I added ". . . but there is a definition of insanity." She stumbled through the reference but she actually said it back to me (insanity is doing the same thing over and over and expecting different results). At this point she looked like she really would rather be somewhere else. Since my point clearly had been made I let her go.
She is part of the team that visits about an hour later on rounds. Before the rounding team enters my room they talk about my case outside my room--this is where the seed I planted takes root. When they came in we talked about my fevers, etc. and the Attending Physician, lo and behold, did have a change to make to my medications. He swapped out one medication that can cause fevers with another that does not.
While it is premature to proclaim anything. I've now been fever-free for 24 hours. At times it feels like one has to be a trial lawyer to encourage the doctors to move from a comfort zone. But perhaps I'm cynical, perhaps the Attending Physician had this in mind all along and did not share it with the intern.
Silver Lining Alert:
This last round of chemo (the one I had a little over a month ago) was billed as one that would be difficult on the digestive tract. Without the sordid details, it has performed as sold. I started the regimen on a liquid diet. And digestive 'issues' have made my willingness or the effectiveness of eating somewhat spotty. As a result I have dropped about 30 pounds and have hovered around the weight-loss mark I had set for myself over 15 years ago! For as bad as I can feel with the fevers, I feel great! Of course, I haven't lost all the stuff you'd want to lose. I'm probably a little on the dehydrated side and I'm certain that as I lounge around in the hospital I'm losing muscle mass as well. But I don't think that accounts for all 30 pounds. A harsh way to go about losing weight, but effective.
As always, thanks for reading.
--Russ.
Yesterday morning I was 'set off' by the routine 7:30 visit from the Intern preceding rounds. She greeted me by saying, "Well we're going to try and find out what is causing these fevers today." Immediately two questions flashed in my mind. Sarcastically, and actually never stated was: . . . and so what have you been doing over the past week?
The question I did ask was, "Oh? What are we going to do different today?" Her response astounded me. She replied "Nothing. We'll just monitor you." After a brief discussion where I confirmed that I understood the medical concerns with letting me out of the hospital with a pattern of daily fevers, I added ". . . but there is a definition of insanity." She stumbled through the reference but she actually said it back to me (insanity is doing the same thing over and over and expecting different results). At this point she looked like she really would rather be somewhere else. Since my point clearly had been made I let her go.
She is part of the team that visits about an hour later on rounds. Before the rounding team enters my room they talk about my case outside my room--this is where the seed I planted takes root. When they came in we talked about my fevers, etc. and the Attending Physician, lo and behold, did have a change to make to my medications. He swapped out one medication that can cause fevers with another that does not.
While it is premature to proclaim anything. I've now been fever-free for 24 hours. At times it feels like one has to be a trial lawyer to encourage the doctors to move from a comfort zone. But perhaps I'm cynical, perhaps the Attending Physician had this in mind all along and did not share it with the intern.
Silver Lining Alert:
This last round of chemo (the one I had a little over a month ago) was billed as one that would be difficult on the digestive tract. Without the sordid details, it has performed as sold. I started the regimen on a liquid diet. And digestive 'issues' have made my willingness or the effectiveness of eating somewhat spotty. As a result I have dropped about 30 pounds and have hovered around the weight-loss mark I had set for myself over 15 years ago! For as bad as I can feel with the fevers, I feel great! Of course, I haven't lost all the stuff you'd want to lose. I'm probably a little on the dehydrated side and I'm certain that as I lounge around in the hospital I'm losing muscle mass as well. But I don't think that accounts for all 30 pounds. A harsh way to go about losing weight, but effective.
As always, thanks for reading.
--Russ.
Wednesday, June 30, 2010
Bingo!
The last Tuesday of every month a volunteer group comes to Hopkins and puts on a little bingo game for the patients who happen to be couped up at the time. I either never crossed paths with this event or was simply unaware it was going on when I was here at other times.
"Bingo?", you ask. Well without getting into the merits and drawbacks of the game itself, lets just say I'm not opposed to a good game of bingo (though it sure is more exciting when you play for cash prizes). This event, of course, were for pretty simple prizes that would mean something to cancer patients or July 4th themed trinkets.
When the announcement went out regarding bingo I thought for a bit and decided to go. After all, I keep lamenting about how bored I am as an inpatient . . .I certainly hadn't played bingo yet.
I meandered out of my room a few minutes before the start and followed another patient with her nurse escort. She clearly had mobility issues, but in this place you come to admire those that continue to press on with what they want to do despite some profound physical limitations or degradations.When I got to the room where they were holding bingo I deftly guided my medicine pole around the table and chairs to take a seat away from the door to make room for all the others who would come. My fellow traveler was helped into a chair at a table right by one of the two doorways into the room.
The blood cancer unit takes up the entire 5th floor of the Weinberg building and is comprised of 4 units labeled A,B,C,D. Each unit contains 15 beds. As far as I know bingo was open to all 4 units. I don't really know what I was expecting in terms of attendance. I probably didn't have enough time to actually contemplate that. But as patients arrived, or more appropriately didn't arrive, I was amazed to find that only 4 patients opted for something new to do.
It started me thinking. Is this a referendum on bingo? Or perhaps I ought to feel thankful to be in my physical condition that such 'activities' are an option for me? Obviously the answer is that it is probably a combination of both. Bingo is a silly, elementary game and admittedly can drone on a bit. But I would bet that there were a few patients that were in no condition to make the simple walk to play bingo, even if they were yearning for something different to do. Everything in perspective . . .
I guess I'll let everyone know that I won twice. Both times I picked out things for the kids--trinkets really, but it will be nice to return home with a peace offering for all they endure as a result of my cancer and the resulting hospitalizations.
I also want to share a somewhat bizarre moment from bingo. During the bingo game the patient I followed to the room was joined by what I would assume was her husband. At one point about halfway through (30 minutes) there was a bit of a commotion coming from where she was seated. I recall now that she seemed nervous about going to bingo in the first place based on the number of reassurances the nurse was giving to her as we walked to the room. At any rate, as I looked over at her it was clear that she wanted nothing more of bingo. She muttered something about feeling paranoid and needed to get up. Her mobility issues made it difficult for her to get out of the folding chairs we were sitting on.
All the while, the person calling out the bingo numbers kept right on going as if nothing was going on. So for the remaining few in the room, we were torn between what was going on with a fellow patient and marking the dots on our bingo cards!
In truth, I'm certain that patients trying to help move other patients is prohibited, so I don't feel too bad that I didn't get up and help. One of the other volunteers did the right thing and ran to get her nurse, who came quickly to assist the patient. Between the nurse and the husband they were able to get her up out of the chair but only after I heard the husband say "you have to push with your legs."
I must be thankful for what has not been taken from me as a result of all this. I can choose well for myself what I want to do (when I have a choice). I remain physically well, despite the disease. And finally, for all the chemicals that have been pumped into my system over the past two years I retain the mental faculties, more or less, that I entered this process with.
Who knew an hour of bingo would yield an opportunity for a bit of introspection and, if you distance yourself, a bit of humor. Glad I went.
As always, thanks for reading.
--Russ.
"Bingo?", you ask. Well without getting into the merits and drawbacks of the game itself, lets just say I'm not opposed to a good game of bingo (though it sure is more exciting when you play for cash prizes). This event, of course, were for pretty simple prizes that would mean something to cancer patients or July 4th themed trinkets.
When the announcement went out regarding bingo I thought for a bit and decided to go. After all, I keep lamenting about how bored I am as an inpatient . . .I certainly hadn't played bingo yet.
I meandered out of my room a few minutes before the start and followed another patient with her nurse escort. She clearly had mobility issues, but in this place you come to admire those that continue to press on with what they want to do despite some profound physical limitations or degradations.When I got to the room where they were holding bingo I deftly guided my medicine pole around the table and chairs to take a seat away from the door to make room for all the others who would come. My fellow traveler was helped into a chair at a table right by one of the two doorways into the room.
The blood cancer unit takes up the entire 5th floor of the Weinberg building and is comprised of 4 units labeled A,B,C,D. Each unit contains 15 beds. As far as I know bingo was open to all 4 units. I don't really know what I was expecting in terms of attendance. I probably didn't have enough time to actually contemplate that. But as patients arrived, or more appropriately didn't arrive, I was amazed to find that only 4 patients opted for something new to do.
It started me thinking. Is this a referendum on bingo? Or perhaps I ought to feel thankful to be in my physical condition that such 'activities' are an option for me? Obviously the answer is that it is probably a combination of both. Bingo is a silly, elementary game and admittedly can drone on a bit. But I would bet that there were a few patients that were in no condition to make the simple walk to play bingo, even if they were yearning for something different to do. Everything in perspective . . .
I guess I'll let everyone know that I won twice. Both times I picked out things for the kids--trinkets really, but it will be nice to return home with a peace offering for all they endure as a result of my cancer and the resulting hospitalizations.
I also want to share a somewhat bizarre moment from bingo. During the bingo game the patient I followed to the room was joined by what I would assume was her husband. At one point about halfway through (30 minutes) there was a bit of a commotion coming from where she was seated. I recall now that she seemed nervous about going to bingo in the first place based on the number of reassurances the nurse was giving to her as we walked to the room. At any rate, as I looked over at her it was clear that she wanted nothing more of bingo. She muttered something about feeling paranoid and needed to get up. Her mobility issues made it difficult for her to get out of the folding chairs we were sitting on.
All the while, the person calling out the bingo numbers kept right on going as if nothing was going on. So for the remaining few in the room, we were torn between what was going on with a fellow patient and marking the dots on our bingo cards!
In truth, I'm certain that patients trying to help move other patients is prohibited, so I don't feel too bad that I didn't get up and help. One of the other volunteers did the right thing and ran to get her nurse, who came quickly to assist the patient. Between the nurse and the husband they were able to get her up out of the chair but only after I heard the husband say "you have to push with your legs."
I must be thankful for what has not been taken from me as a result of all this. I can choose well for myself what I want to do (when I have a choice). I remain physically well, despite the disease. And finally, for all the chemicals that have been pumped into my system over the past two years I retain the mental faculties, more or less, that I entered this process with.
Who knew an hour of bingo would yield an opportunity for a bit of introspection and, if you distance yourself, a bit of humor. Glad I went.
As always, thanks for reading.
--Russ.
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