We arrived at the St Mary's short stay unit exactly one week after being turned away due to my little ibuprofen habit. Now that I am clean and stone-cold sober, they couldn't refuse me. I'm getting to know all the admissions people and the unit nurses so getting checked in was a breeze this time.
The team down in radiology were all new to me. The drill was the same; preliminary ultrasound, meet the nurses, call in the doctor to explain the procedure. This was the third time I heard this explanation but it was a different doctor and he seemed more friendly and took more time. The one disconcerting factor was that they were having a hard time finding the suspect spot on with the ultrasound. The spot is very small and they had difficulty finding it the previous two times as well but it took even longer this time. The doctor and the ultrasound tech finally agreed on the location and they set to work.
This Doc was less stingy on the sedatives and pain meds than the first one. I had to remain awake to hold a deep breath. I don't remember sleeping but it all went so fast and painlessly that I now wonder if he was quicker or I was more out of it. He made three attempts, checking the results each time. The first two core samples looked like plain old raw Chuck liver but on the third try the doctor exclaimed, "Bullseye!". I recall him also saying that this one looked different and he was certain he had got the abnormal spot that had shown up on the CT scan and ultrasound. He also said they would know almost right away if the sample was esophageal cancer but if it was anything else, it would take a week to figure it out and they usually would get a second opinion at Mayo or Johns Hopkins. Of course, a pathologist must make the determination either way and I must wait to find out anything. Late news is good news. So another week of patience is required on my part.
Despite the fact that I felt pretty fine afterwards, a liver biopsy requires 6 hours of hospital bed rest before I could go home. The short stay unit is pretty noisy and sleep was just not coming to me. I first tried reading my New Yorker but with the IV on the one hand and the oxygen sensor on the other, turning pages was not working so well. I resorted to the TV.
Hospital TV is crap; nothing there to offend anyone unless you are offended by commercials, boring talk shows and a channel that shows beautiful nature images with new-age music around the clock. And there there is the Law & Order channel. One syndicated police and courtroom drama rerun after another. That's where I landed and stayed for most of the afternoon. The nurse came in at about 10 minutes to 4:00 to read me the release instructions so I missed the dramatic conclusion to a Law & Order: Special Victims Unit episode where a crazy, charismatic religious fanatic named Abraham had a whole bunch of women and children under his spell. Any one know how that one ends?
Now I'm home and I have to lay low again for another week. No lifting or strenuous exercise and I'm not to touch the ibuprofen. In a few days I'll get a call giving me good news or bad news. And I'll have to take that news without the benefit of being blissed-out on Motrin. It's just one more week.
Tuesday, May 29, 2012
Thursday, May 24, 2012
Could we add one more specialist?
Yes, we can.
Last night my brother-in-law, Bob Willey and my sister-in-law Nancy came over and prepared an amazing dinner for us. Grilled pork tenderloin, vegetable medley, tofu patties, smashed potatoes, roast mushroom caps and an amazing custard with fresh berries for dessert. I sampled it all. It was a terrific evening.
At bedtime, Mary noticed that my right eye was bloodshot. For me, a non-itchy red eye is a warning sign for iritis, also called uveitis. It is an autoimmune disease that attacks one eye; sometimes left, sometimes right. The sure signs are pain, light sensitivity and soft focus. I have tested positive for the gene that makes me susceptible so I can expect it to crop up once in a while. So I was not too surprised when I woke up this morning and turned on a light and felt that telltale zing of eye pain.
My regular eye specialist was on maternity leave but her partner at the Verdier Eye Center, Dr.Chelsky was clearly a real experienced pro. She quickly confirmed what I already knew and went further to make sure that the iritis was not complicated by the lymphoma, which she said could affect the back of my eye and the optic nerve. She confirmed there were no white blood cells back there so it was just classic iritis; my stupid white blood cells attacking my iris for no damn good reason beyond genetic misfortune.
The standard drill is steroid eye drops every hour, tapering off over about 6 weeks and pupil dilation drops twice a day.
That's it! I'm cutting off all new specialists until further notice.
Last night my brother-in-law, Bob Willey and my sister-in-law Nancy came over and prepared an amazing dinner for us. Grilled pork tenderloin, vegetable medley, tofu patties, smashed potatoes, roast mushroom caps and an amazing custard with fresh berries for dessert. I sampled it all. It was a terrific evening.
At bedtime, Mary noticed that my right eye was bloodshot. For me, a non-itchy red eye is a warning sign for iritis, also called uveitis. It is an autoimmune disease that attacks one eye; sometimes left, sometimes right. The sure signs are pain, light sensitivity and soft focus. I have tested positive for the gene that makes me susceptible so I can expect it to crop up once in a while. So I was not too surprised when I woke up this morning and turned on a light and felt that telltale zing of eye pain.
My regular eye specialist was on maternity leave but her partner at the Verdier Eye Center, Dr.Chelsky was clearly a real experienced pro. She quickly confirmed what I already knew and went further to make sure that the iritis was not complicated by the lymphoma, which she said could affect the back of my eye and the optic nerve. She confirmed there were no white blood cells back there so it was just classic iritis; my stupid white blood cells attacking my iris for no damn good reason beyond genetic misfortune.
The standard drill is steroid eye drops every hour, tapering off over about 6 weeks and pupil dilation drops twice a day.
That's it! I'm cutting off all new specialists until further notice.
Tuesday, May 22, 2012
Postponed
Ibuprofen is one of my favorite drugs. I find that it does what it is supposed to do. Most of the aches and pains of a man over 50 can be addressed within 20 minutes by taking a couple of those rust-colored pills. Yesterday, when my nurse-navigator called to let me know that my liquid ibuprofen prescription was renewed but that my surgeon, Dr. McCahill wanted me completely off the Vicodin, I was not too concerned because ibuprofen really does the job of making me comfortable, post-esophagectomy.
So it was a bit of a surprise to me after arriving at the hospital's "short stay unit" at 6:30am, getting prepped and IV-ed, carted down to radiology, having a preliminary ultrasound and the whole team assembled by 9:00 to take a biopsy, that the doctor postponed the procedure because I had not been off ibuprofen for the last 5 days.
"Didn't anyone tell you that ibuprofen is a blood thinner and that you need to stop taking blood thinners before and after liver procedures?"
Well, that's not really how I think of ibuprofen. I think of it as the stuff that makes me feel more normal after my surgery. It helps with the tightness in my gut. It helps with the backache. It even helps with the cough.
Once again, it is the paradox of having 2 cancers and 2 cancer teams. Team esophagus is all up to date on how I'm feeling and how I am dealing with all the post operative side effects and all my medication issues. Team lymphoma, however, has been waiting for the hand-off of a sufficiently healed patient to begin chemotherapy. They thought that was what they were getting until last Thursday when Dr. Scott looked at the CT scan and saw a growing suspicious spot on my liver and ordered a new biopsy. Team lymphoma did not necessarily know that I was taking ibuprofen 4 times a day and the recorded pre-op instructions I received over the phone may have said something about blood thinners but I really did not make the connection.
So the biopsy is rescheduled for next Tuesday. I have the opportunity to free myself from the bondage of pain medications and chemotherapy is pushed back at least to June.
Yeah, it is all pretty frustrating. My health is my own responsibility and this is one more reminder of the diligence required too make sure I am getting the right care.
So it was a bit of a surprise to me after arriving at the hospital's "short stay unit" at 6:30am, getting prepped and IV-ed, carted down to radiology, having a preliminary ultrasound and the whole team assembled by 9:00 to take a biopsy, that the doctor postponed the procedure because I had not been off ibuprofen for the last 5 days.
"Didn't anyone tell you that ibuprofen is a blood thinner and that you need to stop taking blood thinners before and after liver procedures?"
Well, that's not really how I think of ibuprofen. I think of it as the stuff that makes me feel more normal after my surgery. It helps with the tightness in my gut. It helps with the backache. It even helps with the cough.
Once again, it is the paradox of having 2 cancers and 2 cancer teams. Team esophagus is all up to date on how I'm feeling and how I am dealing with all the post operative side effects and all my medication issues. Team lymphoma, however, has been waiting for the hand-off of a sufficiently healed patient to begin chemotherapy. They thought that was what they were getting until last Thursday when Dr. Scott looked at the CT scan and saw a growing suspicious spot on my liver and ordered a new biopsy. Team lymphoma did not necessarily know that I was taking ibuprofen 4 times a day and the recorded pre-op instructions I received over the phone may have said something about blood thinners but I really did not make the connection.
So the biopsy is rescheduled for next Tuesday. I have the opportunity to free myself from the bondage of pain medications and chemotherapy is pushed back at least to June.
Yeah, it is all pretty frustrating. My health is my own responsibility and this is one more reminder of the diligence required too make sure I am getting the right care.
 |
| "Short Stay" has special meaning to me now. |
Thursday, May 17, 2012
Hurry up! No, wait!!
For all who asked about the dates and details regarding my upcoming chemotherapy stay, I told you that I would know today. Well, I was wrong.
I met with Dr. Scott this morning armed with a list of questions regarding the chemotherapy. One of my first questions was, "How did my recent CT scan look?" It was quickly evident that he had not yet looked at the results. He pulled them up on his computer and spent some time studying them. Then he did a quick exam and abruptly left the room.
We waited about 15 minutes for him to return. When he came back, he explained that the spot on my liver that had appeared in the first PET scan at the beginning of all this had grown a bit larger.
To refresh your memory, that original scan showed hot spots on my liver and mediastinum areas. If they were proven positive for esophageal cancer, then I would be at stage 4 and therefore "untreatable" and ineligible for the surgery. They did a liver biopsy first because it was easier to access. The biopsy came up negative. Then the mediastinum biopsy revealed lymphoma. The good news was that the two biopsies proved the esophageal cancer was limited to my esophagus and therefore I was only stage 3 for the esophageal cancer and thus eligible to have my esophagus removed.
Now the liver biopsy has been cast into question. Could it be that it was negative because they completely missed the abnormal area? I had asked them at the time, "If it is not cancer, then what is it?" and I had never really received a straight answer. I also remember that it was a real tricky biopsy and they had to do it twice because he was not sure he got it the first time. I had to be awake and hold a deep breath because they needed my inflated lungs to push the top of my liver out from behind my ribs. I remember the doctor saying, "If I don't get it this time, I'm not going in for a third try." Had we all just gladly accepted the good news without questioning the validity of the result?
So the bottom line is that if the liver spot proves to be esophageal cancer, we are back to stage 4 and that changes everything again. Rather than heroic efforts aimed at a cure, they switch to less heroic or more experimental efforts aimed at a miracle or making me comfortable.
OK, so I had to say that out loud. But the fact is that the first biopsy came back negative and it could be lymphoma and it also could be some other benign growth. But they must find out what it is and why it is growing to conclusively proceed with the planned chemotherapy regimen.
Dr. Scott would not speculate at all. I could not get him to say, 'If it is this then we'll do that'. So I am still in the dark about the chemo. The liver biopsy will be re-performed first thing Tuesday morning. Until then, it's still one day at a time.
I met with Dr. Scott this morning armed with a list of questions regarding the chemotherapy. One of my first questions was, "How did my recent CT scan look?" It was quickly evident that he had not yet looked at the results. He pulled them up on his computer and spent some time studying them. Then he did a quick exam and abruptly left the room.
We waited about 15 minutes for him to return. When he came back, he explained that the spot on my liver that had appeared in the first PET scan at the beginning of all this had grown a bit larger.
To refresh your memory, that original scan showed hot spots on my liver and mediastinum areas. If they were proven positive for esophageal cancer, then I would be at stage 4 and therefore "untreatable" and ineligible for the surgery. They did a liver biopsy first because it was easier to access. The biopsy came up negative. Then the mediastinum biopsy revealed lymphoma. The good news was that the two biopsies proved the esophageal cancer was limited to my esophagus and therefore I was only stage 3 for the esophageal cancer and thus eligible to have my esophagus removed.
Now the liver biopsy has been cast into question. Could it be that it was negative because they completely missed the abnormal area? I had asked them at the time, "If it is not cancer, then what is it?" and I had never really received a straight answer. I also remember that it was a real tricky biopsy and they had to do it twice because he was not sure he got it the first time. I had to be awake and hold a deep breath because they needed my inflated lungs to push the top of my liver out from behind my ribs. I remember the doctor saying, "If I don't get it this time, I'm not going in for a third try." Had we all just gladly accepted the good news without questioning the validity of the result?
So the bottom line is that if the liver spot proves to be esophageal cancer, we are back to stage 4 and that changes everything again. Rather than heroic efforts aimed at a cure, they switch to less heroic or more experimental efforts aimed at a miracle or making me comfortable.
OK, so I had to say that out loud. But the fact is that the first biopsy came back negative and it could be lymphoma and it also could be some other benign growth. But they must find out what it is and why it is growing to conclusively proceed with the planned chemotherapy regimen.
Dr. Scott would not speculate at all. I could not get him to say, 'If it is this then we'll do that'. So I am still in the dark about the chemo. The liver biopsy will be re-performed first thing Tuesday morning. Until then, it's still one day at a time.
Wednesday, May 16, 2012
One less thing
Yesterday I had a tooth pulled. I was dreading it because it felt like just one more indignity in a line of bodily insults. The back story is that I experienced an infection in this particular molar about 8 months ago. The tooth had a root canal and a crown applied years ago so this infection implied a worsening condition. My dentist suspected a cracked root but gave me antibiotics to see if that would solve the problem. It did but the infection returned around Christmas time. My dentist gave me another round of antibiotics along with instructions to arrange to have the tooth pulled by an oral surgeon and an implant post inserted. Once again, the antibiotics did what they were supposed to and the infection went away. Out of sight and almost out of mind. And then the swallowing problem cropped up and eventually led me down the path I am on. More important to this story, it wrenched me off the whole "having a tooth pulled is the worst thing on my horizon" path.
Since the new path is leading up to some intense chemotherapy, I realized that these paths must intersect sometime first, because having an infection occur during chemo when my defenses are low is a very bad thing. And this tooth was a painful mouth infection waiting to happen.
Just scheduling it seemed to be a problem. Between all the other procedures and appointments, I had to make it happen when I had some energy to deal with it and some time to let it heal. My dentist (Dr. Mark Salhaney) whom I've been going to since my mid-twenties, was very helpful in trying to line up the steps to make it happen. Unfortunately, a scheduling SNAFU coincided with an energy crash on my end and the arranged oral surgeon option ended with me snapping passive-aggressively at his receptionist and requesting that they just burn all the paperwork I filled out for them. From my side of it, they had me wait 2 hours and 15 minutes in the waiting room when I had driven across town with the idea that it would take 5 minutes for the oral surgeon to look at my paperwork, x-ray and the recommendation from my dentist and put me in his calendar. Meanwhile, my pain meds wore off. I went home, called Dr. Salhaney and told him about my fail and he mobilized his office to squeeze me in on Tuesday and he'd do the extraction himself.
After all the intense physical crap that has been thrown at me lately, having people I know and like pull a tooth, bordered on a pleasant experience. Nitrous oxide probably helps a lot in that regard. Now it is 24 hours later and I have and extra gap in that row of pearly whites but I have no pain or swelling and I have one less daunting procedure and potential infection to worry about.
It sure doesn't hurt to have several incredibly gorgeous days followed
by a Michigan spring thunderstorm! I'm beginning to feel my health
curve beginning to point upwards again. I still have the numb tongue,
cough, and some difficulty swallowing but my energy is increasing and I'm
sleeping a bit better. I've finally hit a weight that I've wanted to hit for years (though I don't recommend this particular weight loss plan) and I have some out-of-town daughters commencing to descend on Grand Rapids for a visit. It feels like spring.
I finally finished the Hunger Games trilogy (what a downer!) and this morning a couple of books I ordered arrived by UPS. I'm ready for a new mind adventure.
Since the new path is leading up to some intense chemotherapy, I realized that these paths must intersect sometime first, because having an infection occur during chemo when my defenses are low is a very bad thing. And this tooth was a painful mouth infection waiting to happen.
Just scheduling it seemed to be a problem. Between all the other procedures and appointments, I had to make it happen when I had some energy to deal with it and some time to let it heal. My dentist (Dr. Mark Salhaney) whom I've been going to since my mid-twenties, was very helpful in trying to line up the steps to make it happen. Unfortunately, a scheduling SNAFU coincided with an energy crash on my end and the arranged oral surgeon option ended with me snapping passive-aggressively at his receptionist and requesting that they just burn all the paperwork I filled out for them. From my side of it, they had me wait 2 hours and 15 minutes in the waiting room when I had driven across town with the idea that it would take 5 minutes for the oral surgeon to look at my paperwork, x-ray and the recommendation from my dentist and put me in his calendar. Meanwhile, my pain meds wore off. I went home, called Dr. Salhaney and told him about my fail and he mobilized his office to squeeze me in on Tuesday and he'd do the extraction himself.
After all the intense physical crap that has been thrown at me lately, having people I know and like pull a tooth, bordered on a pleasant experience. Nitrous oxide probably helps a lot in that regard. Now it is 24 hours later and I have and extra gap in that row of pearly whites but I have no pain or swelling and I have one less daunting procedure and potential infection to worry about.
I finally finished the Hunger Games trilogy (what a downer!) and this morning a couple of books I ordered arrived by UPS. I'm ready for a new mind adventure.
Sunday, May 13, 2012
Describing the elephant
I had the occasion this week to meet with Dr. Hazle, my "primary care physician" as the insurance company knows him and my "family doctor" as I think of him. My family has been seeing him for about 19 years.
We first started going to him when our new HMO plan required us to find someone in the their network. Margi was pregnant with a being who was to become Abby. We had already decided to pursue a home birth (just as we did with Alice) and we were were preparing ourselves for a furrowed brow as our new doctor (chosen from a list by proximity) would inevitably tell us we were making a big mistake. But Dr. Hazle, as it turned out, was interested. He had been a nurse before he was a doctor and had spent time in Europe where having midwives was not such an uncommon thing. He wanted to meet our midwife and learn more. And that attitude pretty much has been the standard of healthcare I have enjoyed for 19 years; a doctor who always seems interested in the art and science of healing in a way that always brings my perspectives into the context of a discussion about health and whatever the current little annoyance is that brings me in to his office. He always seems to be learning and also seems to be enjoying learning more about his craft. It is really great having someone who knows a little bit about the arc of your family history witnessing your changes and seeing you as a total person and trying to figure out the best way to approach achieving your health and comfort. A good family doctor sees you as a person and not as a disease.
You've heard the story of the group of blind men trying to describe an elephant. Each person describes his experience from his particular point of view, none of them agreeing on the nature of an elephant. That is what the world of specialists that I've been thrown into seems like to me. I am grateful for their enormous expertise on a single aspect of my health. I am grateful that I have health insurance that allows me access to these experts without worrying how much it is going to cost. But what I am finding is that this narrow focus leaves a complex system like a human body wanting. Each procedure or surgery has one or two little annoying complications that seem to fall outside the expertise of the expert. These combined annoyances really impact quality of life. You need someone who can see the whole elephant at once.
A good example is this unproductive cough that no one has been able to explain to me. I keep having my own theories as to why I have a cough but it seems to be a subject that falls outside the expertises of surgery, hematology, oncology, nutrition, ENT (vocal cord therapy), radiology and psychology. Yet this cough seems to be at the root of my discomfort and many of the air-pressure based complications that keep arising. It went away temporarily when I had the vocal cords "fixed" but has been creeping back to annoy me.
Having a Dr. Hazle willing to look at my "extras" knowing that some of them are humiliating to me and pretty minor in the scope of things and then go on to explain them to me in a way that alleviates my anxiety and puts them into perspective is a pretty priceless service. The fact that he knows what I do and the name of my wife and children and what they do is a real humanizing bonus. Everyone should have that; not just those with the good fortune to be employed by someone (or have a spouse employed by someone) who provides decent health insurance. I'm sad for those who are not as fortunate as me in that way.
All I have to do is open my eyes and pay attention and I see so many people I would not want to trade places with. Cancer may have a shot at killing me, but today I still look fantastic, am in reasonably good spirits and have an army of support on my side. I can live with a little cough.
We first started going to him when our new HMO plan required us to find someone in the their network. Margi was pregnant with a being who was to become Abby. We had already decided to pursue a home birth (just as we did with Alice) and we were were preparing ourselves for a furrowed brow as our new doctor (chosen from a list by proximity) would inevitably tell us we were making a big mistake. But Dr. Hazle, as it turned out, was interested. He had been a nurse before he was a doctor and had spent time in Europe where having midwives was not such an uncommon thing. He wanted to meet our midwife and learn more. And that attitude pretty much has been the standard of healthcare I have enjoyed for 19 years; a doctor who always seems interested in the art and science of healing in a way that always brings my perspectives into the context of a discussion about health and whatever the current little annoyance is that brings me in to his office. He always seems to be learning and also seems to be enjoying learning more about his craft. It is really great having someone who knows a little bit about the arc of your family history witnessing your changes and seeing you as a total person and trying to figure out the best way to approach achieving your health and comfort. A good family doctor sees you as a person and not as a disease.
You've heard the story of the group of blind men trying to describe an elephant. Each person describes his experience from his particular point of view, none of them agreeing on the nature of an elephant. That is what the world of specialists that I've been thrown into seems like to me. I am grateful for their enormous expertise on a single aspect of my health. I am grateful that I have health insurance that allows me access to these experts without worrying how much it is going to cost. But what I am finding is that this narrow focus leaves a complex system like a human body wanting. Each procedure or surgery has one or two little annoying complications that seem to fall outside the expertise of the expert. These combined annoyances really impact quality of life. You need someone who can see the whole elephant at once.
A good example is this unproductive cough that no one has been able to explain to me. I keep having my own theories as to why I have a cough but it seems to be a subject that falls outside the expertises of surgery, hematology, oncology, nutrition, ENT (vocal cord therapy), radiology and psychology. Yet this cough seems to be at the root of my discomfort and many of the air-pressure based complications that keep arising. It went away temporarily when I had the vocal cords "fixed" but has been creeping back to annoy me.
Having a Dr. Hazle willing to look at my "extras" knowing that some of them are humiliating to me and pretty minor in the scope of things and then go on to explain them to me in a way that alleviates my anxiety and puts them into perspective is a pretty priceless service. The fact that he knows what I do and the name of my wife and children and what they do is a real humanizing bonus. Everyone should have that; not just those with the good fortune to be employed by someone (or have a spouse employed by someone) who provides decent health insurance. I'm sad for those who are not as fortunate as me in that way.
All I have to do is open my eyes and pay attention and I see so many people I would not want to trade places with. Cancer may have a shot at killing me, but today I still look fantastic, am in reasonably good spirits and have an army of support on my side. I can live with a little cough.
Thursday, May 10, 2012
Capacities
I started my morning by drinking 450 mL (about 2 cups) of Readi-Cat 2 (Mochaccino smoothie flavor with a picture on the label of an elegant, cafe cup-of-something topped with milk foam, sprinkled with cinnamon and garnished with various chocolate delights arranged around the saucer- sell it, baby). Readi-Cat 2, for those familiar with CT scans is a Barium Sulfate suspension, also known as "contrast". Drinking it before a scan makes your gastrointestinal track magically appear when activated through an IV dye injection just before your spin through the doughnut. I know, it sounds like a delicious experience.
So the taste is not delicious but it is also not horrible. One swallow at a time, it all goes down. Since my biggest worry is the capacity of my stomach, a small but unknown volume, I cheated (with permission) by injecting about a third of it into my J-tube.
This stomach capacity thing is a real issue. If you have been reading this blog all along, you know that my stomach is stretched vertically inside my chest cavity and all above the diaphragm. There is no valve at the top so sort of like an open jug. When I get hungry, I get hungry just like I did before with a feeling in my belly. It must be that the brain send its signals to the gut regardless of where your stomach resides. I eat and then after a while I feel full (also in my gut). And just like a normally arranged stomach, it is possible to eat too much before you get the internal warning to stop eating.
Last night I experienced what happens when I over-eat. Overeating, by the way, is consuming about half of what I used to eat at a meal. I have to learn to eat about a third of a "normal" portion. I also have to refrain from drinking at meals. Sips of water only. If the food is particularly appealing and I forget myself and drink a half a glass of water, by the time that feeling of "okay, quit eating" comes along, I 'm topped off pretty well. Again, the feeling is in my gut. That one or two bites or sips over the line expresses itself in a fairly standard way. Skip the next paragraph if your imagination is good enough.
Both Mary and I have been worrying about vomiting with the new anatomy. We just didn't know how it works. Well, I'll tell you. For all but the morbidly curious, you have been duly warned! Normally we feel that pressure and the impending volcanic eruption building from below the diaphragm. We have a little bit of an early warning system in place giving us time to run for the bathroom. With no esophagus or stomach valve to launch through and without the propulsion from a cramping diaphragm, a gurgley cough tells me that the contents level in the stomach is just a little to close to the opening of the windpipe. A bit of a deeper cough and my mouth is full of the last few bites of supper. No retching. No pain. No taste of bile. Just a mouthful and a brisk walk to the sink or toilet. I'm topped off and I know enough to skip dessert. I think I'm going to get better at estimating food volumes.
Back to my story, I arrive at St. Mary's radiation with a full 450ml of Readi-Cat 2 under my belt. The first thing they do is give you another 450ml bottle and a straw. I warned them about the size of my stomach and they advised me to do the best I can. I'm joined in the waiting/drinking room by someone I know, my Dominican-Sister friend, Jude. She already knows the drill about having to drink 2 bottles. We swap stories.
The Radiation nurse soon brought me into another little room where he was supposed to administer an IV but he noticed that I already had one. Yesterday, I was successful in convincing my vocal cord procedure nurse, Ilsa, to just package up the perfect IV she had just administered in a to-go package. She thought it a reasonable request and she taped it up to the back of my hand real good. The radiation nurse tested it and gave me the green light to use it without enduring a new poke.
The CT scan was easy enough and uneventful until they did the pass where dye is injected. They warn you that activated contrast may give you a sudden feeling that you have to pee. I felt most of the discomfort in my face. My eyes started watering and my mouth salivating and the end of my scan was punctuated with a sneeze. The Radiation Technologist seemed concerned about the sneeze. That was a warning sign of an allergic reaction. I told him that my tongue felt all prickly and breathing was a bit more labored. he called in his boss and they sent me down the hall to get a shot of Benedryl and they marked me up on my chart as allergic to contrast. I guess this is the case in 5% of patients. And you'd think that means I would not have to drink Readi-Cat mochaccino smoothie ever again but apparently it means next time I get the shot of Benedryl first.
So I've been sitting around all afternoon with a fat tongue in a Benedryl haze, feeling sorry for myself. I still feel full from this morning. All this new capacity to eat seems wasted. On top of that, yesterday's vocal cord procedure, while soothing my cough, introduced a new side effect: The left half of my tongue is numb. I can barely taste anything. It is not an unusual side effect and the sensation will eventually return but along with my squeaky voice, I am a 3D picture of a semi-defeated man. Well, an uncomfortable man, anyway. It can only get better from here!
So the taste is not delicious but it is also not horrible. One swallow at a time, it all goes down. Since my biggest worry is the capacity of my stomach, a small but unknown volume, I cheated (with permission) by injecting about a third of it into my J-tube.
This stomach capacity thing is a real issue. If you have been reading this blog all along, you know that my stomach is stretched vertically inside my chest cavity and all above the diaphragm. There is no valve at the top so sort of like an open jug. When I get hungry, I get hungry just like I did before with a feeling in my belly. It must be that the brain send its signals to the gut regardless of where your stomach resides. I eat and then after a while I feel full (also in my gut). And just like a normally arranged stomach, it is possible to eat too much before you get the internal warning to stop eating.
Last night I experienced what happens when I over-eat. Overeating, by the way, is consuming about half of what I used to eat at a meal. I have to learn to eat about a third of a "normal" portion. I also have to refrain from drinking at meals. Sips of water only. If the food is particularly appealing and I forget myself and drink a half a glass of water, by the time that feeling of "okay, quit eating" comes along, I 'm topped off pretty well. Again, the feeling is in my gut. That one or two bites or sips over the line expresses itself in a fairly standard way. Skip the next paragraph if your imagination is good enough.
Both Mary and I have been worrying about vomiting with the new anatomy. We just didn't know how it works. Well, I'll tell you. For all but the morbidly curious, you have been duly warned! Normally we feel that pressure and the impending volcanic eruption building from below the diaphragm. We have a little bit of an early warning system in place giving us time to run for the bathroom. With no esophagus or stomach valve to launch through and without the propulsion from a cramping diaphragm, a gurgley cough tells me that the contents level in the stomach is just a little to close to the opening of the windpipe. A bit of a deeper cough and my mouth is full of the last few bites of supper. No retching. No pain. No taste of bile. Just a mouthful and a brisk walk to the sink or toilet. I'm topped off and I know enough to skip dessert. I think I'm going to get better at estimating food volumes.
Back to my story, I arrive at St. Mary's radiation with a full 450ml of Readi-Cat 2 under my belt. The first thing they do is give you another 450ml bottle and a straw. I warned them about the size of my stomach and they advised me to do the best I can. I'm joined in the waiting/drinking room by someone I know, my Dominican-Sister friend, Jude. She already knows the drill about having to drink 2 bottles. We swap stories.
The Radiation nurse soon brought me into another little room where he was supposed to administer an IV but he noticed that I already had one. Yesterday, I was successful in convincing my vocal cord procedure nurse, Ilsa, to just package up the perfect IV she had just administered in a to-go package. She thought it a reasonable request and she taped it up to the back of my hand real good. The radiation nurse tested it and gave me the green light to use it without enduring a new poke.
The CT scan was easy enough and uneventful until they did the pass where dye is injected. They warn you that activated contrast may give you a sudden feeling that you have to pee. I felt most of the discomfort in my face. My eyes started watering and my mouth salivating and the end of my scan was punctuated with a sneeze. The Radiation Technologist seemed concerned about the sneeze. That was a warning sign of an allergic reaction. I told him that my tongue felt all prickly and breathing was a bit more labored. he called in his boss and they sent me down the hall to get a shot of Benedryl and they marked me up on my chart as allergic to contrast. I guess this is the case in 5% of patients. And you'd think that means I would not have to drink Readi-Cat mochaccino smoothie ever again but apparently it means next time I get the shot of Benedryl first.
So I've been sitting around all afternoon with a fat tongue in a Benedryl haze, feeling sorry for myself. I still feel full from this morning. All this new capacity to eat seems wasted. On top of that, yesterday's vocal cord procedure, while soothing my cough, introduced a new side effect: The left half of my tongue is numb. I can barely taste anything. It is not an unusual side effect and the sensation will eventually return but along with my squeaky voice, I am a 3D picture of a semi-defeated man. Well, an uncomfortable man, anyway. It can only get better from here!
Wednesday, May 9, 2012
Vocal cord update
I'm just back from the vocal cord do-hickey procedure. The GREAT news is that it seems to have relieved my most persistently annoying, stressful symptom... the cough. I'm not coughing anymore and so breathing feels so much better. Whew!
I have a pretty sore throat and currently I still have no voice. Even the raspy Clint Eastwood voice is no longer in my vocal repertoire. I've got a whisper and that's it. But we will see what happens after a nap and some ibuprofen. I just had surgery so we'll wait and see. Dr. Winkle said he thought the procedure went well. General anesthesia has me feeling groggy and so I must crash.
More later.
I have a pretty sore throat and currently I still have no voice. Even the raspy Clint Eastwood voice is no longer in my vocal repertoire. I've got a whisper and that's it. But we will see what happens after a nap and some ibuprofen. I just had surgery so we'll wait and see. Dr. Winkle said he thought the procedure went well. General anesthesia has me feeling groggy and so I must crash.
More later.
Monday, May 7, 2012
Oh swallowing, how I have missed you!
I just returned from my outpatient esophageal dilation procedure. Essentially they just stretch the constricted parts of my esophagus. Wait.... I don't have any esophagus to speak of. Still trying to get my mind around what to call what I've got. But that is beside the point. It works! A swallow now feels like a swallow as opposed to feeling like one of those spiral wishing well displays they have at museums.
It took 'em 2 tries to get the IV in this time. This does not bode well for the fact that I'll need two more IVs later this week. But who cares. My throat is a little sore but my diet is now officially UNRESTRICTED. I can eat what I want as long as it is in very small portions. Happy Day!
It took 'em 2 tries to get the IV in this time. This does not bode well for the fact that I'll need two more IVs later this week. But who cares. My throat is a little sore but my diet is now officially UNRESTRICTED. I can eat what I want as long as it is in very small portions. Happy Day!
Sunday, May 6, 2012
Limits
It has been more difficult to write this past week because there has been very little exposition taking place in my story. It has been a week of testing out limits of what I can do.
I went on an outing to see the media premiere of a film I worked on called Waterwalk. (Thanks to Ed deJong and Rob Toft for rides.) It was good to see some people I had not seen in a while and also to rediscover that story. I had done some miscellaneous crew work on the film (shot a few scenes, operated the boom mic on a few others and more importantly, edited an early rough cut about a year ago) and I was anxious to see how they had resolved the story and timeline gaps I had discovered during my edit. I was pleased to see that the story held together pretty well. The film is not really finished (it was apparent) and needed more time in the edit room and in a sound design suite but it definitely had some fine qualities. And apparently, it is going to get some extra attention for its shortcomings.
That outing showed me the limits of my physical strength. I experienced lightheadedness after a walk from the parking lot and then again each time I stood up from my comfy theater seat. It surprised me.
I also tried a little video editing. I had a few, final changes to make on a project for Disability Advocates of Kent County that needed to happen right before I went in for surgery. We had to put that project on ice (thanks to Sondra and Jocelyn for being patient and understanding). It went well! I noticed how much energy I burn just applying brain power and realized that I could sustain myself for a couple of hours with no problem. The weird thing had more to do with my neck scar. I never realized how much craning and tilting I do when I am using my big monitor and utilizing every inch of that screen. I could feel every stretch.
The next day I tackled another very small video edit for Backstage Drama, a worthy community project that I have worked on in various capacities over the past year. It is a serial web comedy/drama that sells subscriptions and donates a substantial percentage of that fee to a community theater of your choice. Every once in a while they get a video testimonial from a famous stage personality and I have volunteered to tweak them into reasonable-length web promos. So on Saturday, I knocked out one from Ed Asner (of Mary Tyler Moore Show fame). Thanks to Aaron Bannasch for going out of his way to help me convert the raw footage to a format I could work with.
And of course I tested my ability to go beyond liquids. My first test was illustrated in my last blog entry and I felt very good about it except that it also made me feel very full. It doesn't take much. My 2nd test was refried beans, melted cheese and an egg wrapped with plain yogurt in a tortilla. I guess I approached that one with too much confidence because the first well-chewed bite got stuck in the opening and I had to do a little Heimlich cough to clear it. I am now approaching everything that goes in very cautiously.
Last night we made spaghetti with marinara sauce and a lettuce salad. I gave myself a serving that looked to be about half of what I might usually heap on my plate. Everything seems delicious too me right now and the spaghetti felt so good in my mouth! I ate about half of what was on my plate and then started on the salad. One little cough later and I realized that I was literally filled to the top of my stomach (which is only inches from the back of my throat). I quickly excused myself from the table for fear that I might vomit. (Mary later told me that when I stood up and turned around, my pants slipped off my thinning hips and I showed a couple of inches of butt crack to my fellow diners.) I coughed about a teaspoon of masticated lettuce into the bathroom sink and resolved to skip the after-dinner mint, despite the fact that it was only wafer-thin.
So I have to consider the timing of everything that goes in. If I'm going to have a glass of water I either should drink it well before dinner or well after. One might say, "all things in modulation".
Speaking of weight, I know I have lost some and will lose more. The health professionals want me to maintain as much weight as I can before chemo. I just looked up the optimal weight for my height. There is a range but I was surprised to find out that I am still 10 pounds over the top figure in that range and almost 30 pounds over the "optimal weight" which, coincidentally, is what I weighed in college. We kind of get used to being overweight I guess. Maybe it is a good thing to re-examine portions needed to maintain a healthy body.
Tomorrow starts a pretty intense week, full of appointments and procedures that will tweak me into shape for entering chemotherapy. Maybe there will be something to write about!
I went on an outing to see the media premiere of a film I worked on called Waterwalk. (Thanks to Ed deJong and Rob Toft for rides.) It was good to see some people I had not seen in a while and also to rediscover that story. I had done some miscellaneous crew work on the film (shot a few scenes, operated the boom mic on a few others and more importantly, edited an early rough cut about a year ago) and I was anxious to see how they had resolved the story and timeline gaps I had discovered during my edit. I was pleased to see that the story held together pretty well. The film is not really finished (it was apparent) and needed more time in the edit room and in a sound design suite but it definitely had some fine qualities. And apparently, it is going to get some extra attention for its shortcomings.
That outing showed me the limits of my physical strength. I experienced lightheadedness after a walk from the parking lot and then again each time I stood up from my comfy theater seat. It surprised me.
I also tried a little video editing. I had a few, final changes to make on a project for Disability Advocates of Kent County that needed to happen right before I went in for surgery. We had to put that project on ice (thanks to Sondra and Jocelyn for being patient and understanding). It went well! I noticed how much energy I burn just applying brain power and realized that I could sustain myself for a couple of hours with no problem. The weird thing had more to do with my neck scar. I never realized how much craning and tilting I do when I am using my big monitor and utilizing every inch of that screen. I could feel every stretch.
The next day I tackled another very small video edit for Backstage Drama, a worthy community project that I have worked on in various capacities over the past year. It is a serial web comedy/drama that sells subscriptions and donates a substantial percentage of that fee to a community theater of your choice. Every once in a while they get a video testimonial from a famous stage personality and I have volunteered to tweak them into reasonable-length web promos. So on Saturday, I knocked out one from Ed Asner (of Mary Tyler Moore Show fame). Thanks to Aaron Bannasch for going out of his way to help me convert the raw footage to a format I could work with.
And of course I tested my ability to go beyond liquids. My first test was illustrated in my last blog entry and I felt very good about it except that it also made me feel very full. It doesn't take much. My 2nd test was refried beans, melted cheese and an egg wrapped with plain yogurt in a tortilla. I guess I approached that one with too much confidence because the first well-chewed bite got stuck in the opening and I had to do a little Heimlich cough to clear it. I am now approaching everything that goes in very cautiously.
Last night we made spaghetti with marinara sauce and a lettuce salad. I gave myself a serving that looked to be about half of what I might usually heap on my plate. Everything seems delicious too me right now and the spaghetti felt so good in my mouth! I ate about half of what was on my plate and then started on the salad. One little cough later and I realized that I was literally filled to the top of my stomach (which is only inches from the back of my throat). I quickly excused myself from the table for fear that I might vomit. (Mary later told me that when I stood up and turned around, my pants slipped off my thinning hips and I showed a couple of inches of butt crack to my fellow diners.) I coughed about a teaspoon of masticated lettuce into the bathroom sink and resolved to skip the after-dinner mint, despite the fact that it was only wafer-thin.
So I have to consider the timing of everything that goes in. If I'm going to have a glass of water I either should drink it well before dinner or well after. One might say, "all things in modulation".
Speaking of weight, I know I have lost some and will lose more. The health professionals want me to maintain as much weight as I can before chemo. I just looked up the optimal weight for my height. There is a range but I was surprised to find out that I am still 10 pounds over the top figure in that range and almost 30 pounds over the "optimal weight" which, coincidentally, is what I weighed in college. We kind of get used to being overweight I guess. Maybe it is a good thing to re-examine portions needed to maintain a healthy body.
Tomorrow starts a pretty intense week, full of appointments and procedures that will tweak me into shape for entering chemotherapy. Maybe there will be something to write about!
Thursday, May 3, 2012
Dreaming
I dreamed this morning that I was in a math class being taught by my 8th grade English teacher. We were supposed to be copying problems that she was writing on the board. They were logic story problems, something I kind of like, but I was frustrated by my inability to copy them. She would erase the previous problem after she explained it and move on to the next one. I kept asking her to go back and she continued to reprimand me for not keeping up. After class I tried to find fellow students who would let me use his or her notes. A girl loaned me her perfectly legible notes (how had she typed them up along with perfect illustrations?) but I still couldn't manage to copy them. I couldn't find a pencil and then when I did, I couldn't find her notes again. I finally woke up enough to realize that I was well beyond graduating from math class and that this assignment was not important.
Years ago I realized that reading and writing are activities that don't work in dreams. Your mind can't both hold a page of text while you read it and then continue to hold it so you can go back a sentence and re-read it. I used to dream I was short order cooking but whenever I looked up at the orders, I could not read the orders and I certainly could not check them for mistakes. Time moves in one direction and when you don't have the means to freeze and record time, there is a hopeless feeling of loss of control. Living in the moment is good but we still like the ability and the tools to hold on to the more meaningful moments.
I'm definitely feeling the melancholia of being infirm. I am unable to function in the way I am accustomed. Earlier I could feel daily progress towards strength but now it seems like I am feeling the same old shortcomings. Why am I so fatigued? This food pump ritual is beginning to feel like a chore. Why do I still have this non-productive cough? I find myself measuring time in 4-hour pain medication intervals. Not that the pain is substantial; it is more of a tightness that reminds me of my infirmity. And then here is the indignity of needing to have a tooth pulled. It is not causing problems now but a soon as the antibiotics wear off it will become an annoyance. I have to squeeze an extraction in there somewhere. We can't risk a tooth infection during chemo.
I do have several upcoming milestones to help me measure the time.
A shower and a shave will help. So would a "flying" dream but those seem harder to come by and never when you want them.
Years ago I realized that reading and writing are activities that don't work in dreams. Your mind can't both hold a page of text while you read it and then continue to hold it so you can go back a sentence and re-read it. I used to dream I was short order cooking but whenever I looked up at the orders, I could not read the orders and I certainly could not check them for mistakes. Time moves in one direction and when you don't have the means to freeze and record time, there is a hopeless feeling of loss of control. Living in the moment is good but we still like the ability and the tools to hold on to the more meaningful moments.
I'm definitely feeling the melancholia of being infirm. I am unable to function in the way I am accustomed. Earlier I could feel daily progress towards strength but now it seems like I am feeling the same old shortcomings. Why am I so fatigued? This food pump ritual is beginning to feel like a chore. Why do I still have this non-productive cough? I find myself measuring time in 4-hour pain medication intervals. Not that the pain is substantial; it is more of a tightness that reminds me of my infirmity. And then here is the indignity of needing to have a tooth pulled. It is not causing problems now but a soon as the antibiotics wear off it will become an annoyance. I have to squeeze an extraction in there somewhere. We can't risk a tooth infection during chemo.
I do have several upcoming milestones to help me measure the time.
- Today I theoretically graduate from liquids-only to soft foods. I'm anxious to experiment but also feeling cautious. I want no more setbacks. My stomach is so small right now that I can't look at portions the way I used to. How much spaghetti is too much?
- Today I also plan to attend the media premiere of "Waterwalk" a film that I worked on from time to time over the last couple of years. It'll be my first post-op non-medical-related outing.
- Friday I meet with Dr. McCahill to answer a bunch of my burning questions about eating.
- Monday I have an "Esophagus Dialation" outpatient procedure in the hospital. General anesthesia means more IVs assuming they can still find something to poke. Since I don't actually have an esophagus, I'm wondering about all the new anatomy semantics.
- Wednesday is the "One hand clapping" procedure on my vocal cords... also general anesthesia. Maybe they should leave the IV in?
- Thursday is another CAT scan. I'll need an IV for that too.
A shower and a shave will help. So would a "flying" dream but those seem harder to come by and never when you want them.
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