This current hospitalization has shown me what a well-oiled machine my local crisis management team has become. We're so accustomed to this roller coaster routine by now that each of us knows our role down pat. My sister Terry called me early yesterday morning to say she'd come sit with Phil for the morning shift so I could go with Olivia to celebrate the "First 100 Days of School" and Valentine's Day. Josh started cooking in the morning so we could have homemade manicotti for dinner, brought to us at the hospital I might add, so Phil didn't have to gag down the Turkey a la King they put in front of him. He also picked up the kids from school and entertained them/developed their character (depending on how you look at it) for the rest of the afternoon and evening. Josh even took care of our dog Nero's deep emotional needs and brought him over to hang out all day with their dogs.
Today my parents joined in and took Bennett to his baseball game. Terry and Josh have Olivia and Nero and will resume with Bennett when my parents meet up with them later today. Tomorrow will be more of the same with Jason and Becky and their dogs for entertainment and more dog camaraderie for Nero. It's what families do, or should do that is, and I am very fortunate to have good family around me.
Phil called me at 9 this morning and sounded well rested and strong of voice. He had a decent sleep despite being bothered all night getting blood and antibiotics. He was able to take meds to get back to sleep and after 3 units of blood he's singing a new song. His L eye is a bit swollen and slightly red so his on-call infectious disease consultant ordered a STAT MRI to see what's going on with the eye, sinus and mucor situation. Dr. Kossman was going to do this anyway so now it's in the pipeline. He just returned from having that completed so we'll await that important piece of information. Otherwise, his blood counts are coming up, including the WBCs, and he is slowly feeling better.
That's all for now so stay tuned and thank you for keeping us in your prayers.
Showing posts with label eye. Show all posts
Showing posts with label eye. Show all posts
Saturday, February 12, 2011
Saturday, September 18, 2010
Sweet Dreams
I'm sitting here next to Phil, the two of us "canoodling" according to the nurses, in his single hospital bed. This is a strange place to be writing the blog from, but it works for today. He's asleep, more or less, his slumber punctuated by the occasional fitful dream wherein he appears to be conducting an orchestra or perhaps, filing things. As an observer, I really can't tell. You see, I've never actually seen my husband dream. Usually I am asleep right beside him, not sitting next to him for hours at a time watching him reach for unseen objects or listening to his snippets of conversations or partially delivered speeches . It is both educational and instructional but at this juncture I have to say it is mostly unsettling.
He was like this all of yesterday and it was sobering, in case you couldn't tell from my post. The infection combined with the fatigue and all the meds really had him wiped out. When I called Phil's cell phone this morning I really wasn't expecting him to answer. When he did I was beyond thankful just to hear his raspy voice. What's more, he told me he was reading his Kindle -- I about choked on my coffee! Talk about a turn around. He still sounded terrible but he was reading, focusing, and using his mind Glory Be to God.
I was really anxious to see him and talk through all that had happened in the last 36 hours; to see what he remembered and make certain he understood what was going on. When I finally got everything handled at home and got over to the hospital I walked in to find him in much the same condition as yesterday - conducting his magnum opus. Turns out he was getting another unit of blood and was totally snowed on 50 mg of Benadryl to prevent an allergic reaction to the blood products -- so he's completely gonzo, zonked, out-of-it, looped, in la-la land again. Crap! What have you done to my husband - I wanted to talk to him! This time though, I get it. It's not all infection and bad news making him act this way. I have that little gift of having heard his voice, the clarity in it and the focused intent in his words to hang onto.
Today being Saturday, apparently no physician in their right mind wanted to round on the patients before 3 o'clock so I timed my visit just right. I was here in time to get the report of the day straight from the oncologist and infectious disease doc's mouths and things are indeed looking better. It is so very good to have their objective report because even as a trained medical professional, it is difficult to know what to make of such a difficult situation when one is personally involved.
His blood cultures are indeed growing out a bacterial infection, E. coli. Before you freak out -- we're not talking about the tainted hamburger meat type or the flesh-eating bacteria here. Just plain old garden variety E. coli. That's not to say it is harmless but just don't go losing your minds. The ID folks believe his port should be fine and they are making several changes to his antibiotic regimen. He was apparently on 5 when I thought he was on 3. Shows you what happens when you grab a cat nap. He will continue on ceftriaxone as well as the antiviral and antifungal.
His CSF cultures have yet to grow any bacteria which is good news. The rest of the studies will be in later in the week - things like Valley Fever, toxoplasmosis, herpes, etc. The outliers so to speak. Until then it's stay the course.
Phil will get more RBCs today to boost his anemia and begin to get Neupogen (a more rapid acting agent) to stimulate WBC cell production. Once his WBCs come back he should rebound much more quickly and feel significantly better. Lastly he will see the ophthalmologist to begin some exercises to regain the use of the muscles in his eye and prevent any further losses.
He's got his work and recovery cut out for him. It really amazes me to think, he's only completed one cycle of chemotherapy. Yikes, just 4 to 6 more to go. Think we'll stick with taking those one day at a time. For now, so what if Phil likes to conduct orchestras, or file things, or compose speeches in his sleep? I think it's great that he's dreaming these few days away in a medicinal fog - God know he's earned it.
He was like this all of yesterday and it was sobering, in case you couldn't tell from my post. The infection combined with the fatigue and all the meds really had him wiped out. When I called Phil's cell phone this morning I really wasn't expecting him to answer. When he did I was beyond thankful just to hear his raspy voice. What's more, he told me he was reading his Kindle -- I about choked on my coffee! Talk about a turn around. He still sounded terrible but he was reading, focusing, and using his mind Glory Be to God.
I was really anxious to see him and talk through all that had happened in the last 36 hours; to see what he remembered and make certain he understood what was going on. When I finally got everything handled at home and got over to the hospital I walked in to find him in much the same condition as yesterday - conducting his magnum opus. Turns out he was getting another unit of blood and was totally snowed on 50 mg of Benadryl to prevent an allergic reaction to the blood products -- so he's completely gonzo, zonked, out-of-it, looped, in la-la land again. Crap! What have you done to my husband - I wanted to talk to him! This time though, I get it. It's not all infection and bad news making him act this way. I have that little gift of having heard his voice, the clarity in it and the focused intent in his words to hang onto.
Today being Saturday, apparently no physician in their right mind wanted to round on the patients before 3 o'clock so I timed my visit just right. I was here in time to get the report of the day straight from the oncologist and infectious disease doc's mouths and things are indeed looking better. It is so very good to have their objective report because even as a trained medical professional, it is difficult to know what to make of such a difficult situation when one is personally involved.
His blood cultures are indeed growing out a bacterial infection, E. coli. Before you freak out -- we're not talking about the tainted hamburger meat type or the flesh-eating bacteria here. Just plain old garden variety E. coli. That's not to say it is harmless but just don't go losing your minds. The ID folks believe his port should be fine and they are making several changes to his antibiotic regimen. He was apparently on 5 when I thought he was on 3. Shows you what happens when you grab a cat nap. He will continue on ceftriaxone as well as the antiviral and antifungal.
His CSF cultures have yet to grow any bacteria which is good news. The rest of the studies will be in later in the week - things like Valley Fever, toxoplasmosis, herpes, etc. The outliers so to speak. Until then it's stay the course.
Phil will get more RBCs today to boost his anemia and begin to get Neupogen (a more rapid acting agent) to stimulate WBC cell production. Once his WBCs come back he should rebound much more quickly and feel significantly better. Lastly he will see the ophthalmologist to begin some exercises to regain the use of the muscles in his eye and prevent any further losses.
He's got his work and recovery cut out for him. It really amazes me to think, he's only completed one cycle of chemotherapy. Yikes, just 4 to 6 more to go. Think we'll stick with taking those one day at a time. For now, so what if Phil likes to conduct orchestras, or file things, or compose speeches in his sleep? I think it's great that he's dreaming these few days away in a medicinal fog - God know he's earned it.
Friday, September 17, 2010
I Hate Cancer
Don't even know where to begin this one. It's only been a day or so but I've lost all sense of time again. Wasn't it just the other day I was practically bragging about how wonderfully everything was going? Reveling in the blah-ness of it all? Extolling the merits of being underwhelmed? Well, let's just say that ship has sailed.
It started out simply enough in the mid afternoon two days ago. A mild headache, nothing a few Tylenol couldn't take care of. That is until a few Tylenol couldn't take care of it and Phil had to move on to the big guns. By that evening we were making a call to the doctor because 10 mg of oxycodone weren't doing jack-squat and he was in excruciating pain whenever he moved his left eye. Fortunately for us, and one of God's small mercies, Dr. Kossman was on call.
Before I continue, I have to say this. It really can't be understated how awesome it is to reach your own doctor when you call the on-call service in a crisis. There is no explaining to do, no background to give, no time wasted. You just hit the ground running. And who's voice do you most want to hear when you're in crisis but the one who's been holding your hand and shepherding you through? So, when we reached Dr. Kossman I already felt better for Phil and whatever the hell was going on with him. The Captain was at the helm.
Back to the drama that was unfolding in my bedroom (don't even go there). After much discussion we decided to try other options for pain relief rather than spend the night in the ER and would check in with Dr. Kossman first thing in the morning. Despite our best laid plans however, it was a long, pain-filled, sleepless night. In the morning, because Phil had developed double vision in his left eye and numbness across the left portion of his scalp during the night, we were sent to an ophthalmologist. By now Phil could barely open his left eye and it was bulging a bit.
After a very thorough eye exam, the working diagnosis was that he had an evolving cranial nerve palsy of the III and V cranial nerves. The III nerve controls the movements of the eye muscles and the 1st branch of the V nerve controls the sensation across his scalp. Some inflammatory process in the brain was to blame for this. But what? Tumor? Infection? He needed an MRI STAT. Sounds like a scene from ER -- but unfortunately it wasn't. To say he looked like shit is to be flattering and I know he didn't feel much better.
Dr. Kossman, being the consummate physician he is, wanted to order the MRI himself and who am I to stop him? The guy is freakin awesome. On a crazy busy clinic day, he walked across the street and spent 30 minutes looking over Phil's MRI from one month ago with two neuro-radiologists before seeing us to discuss our next move. He's just that kind of doctor. Oh, and he worked us into his already unforgiving schedule. When he took Phil's blood it showed the obvious -- profound anemia, next-to-no platelets, and only 200 WBCs. That alone would make anyone feel like crap but combine it with a bulging eyeball, headache, postchemotherapy, and no sleep...you get the picture. When given the option to go home after the MRI or go in the hospital for pain control and support, Phil cried "Uncle!" and he got a bed on 3 South faster than I've ever seen.
Things happened pretty fast from there on out. He had lots of labs drawn including blood cultures. He was given IV fluids and 2 units of RBCs and platelets. He had his MRI. A neurologist (Dr. Evans) consulted on his case. An infectious disease specialist (Dr. Mayer) consulted on his case. Dr. Kossman came and rounded on him at the end of his day ~ 8:30p.m. More blood was drawn. More platelets were hung. Vancomycin (an antibiotic), Acyclovir (an antiviral), and Amphotericin (an antifungal) were all hung. Pretty much the whole kitchen sink was going into the guy.
And here's why: According to the MRI the cranial nerve palsy is due to an inflammatory/infectious process going on in and around the L orbit and in the cavernous sinus deeper in the brain. Shit, his brain is infected. That's serious. No wonder there was so much damn foot traffic through his room this evening. Those were my thoughts on the drive home from the hospital last night, when I could start wrapping my mind around what was going on. It's amazing how long it takes things to sink in when you're in crisis mode.
Today as I write this we now know that his blood cultures are all growing bacteria, gram negative rods for you medical folks. It is not uncommon for neutrapenic (immunosuppressed) people to grow gram negative rods in their blood cultures. However, this suggests that Phil may have two separate processes going on. Dr. Mayer believes that to be the case. He thought out loud to me that his port could be the source of this blood infection and he will do everything he can to sterilize the blood with the antimicrobials to save the port. Otherwise he'll need a new port down the line.
As for the infection in the brain, he doubted that was related to the bacteria in the blood but he won't know until the cultures and studies come back in several more days. Phil did have a blood patch in late August with his first spinal tap which if done with infected blood could have been a source of contamination. However, Dr. Mayer believes the timing is too far out. So, we will watch and play the waiting game. Meanwhile, Phil is very tired, weak and out of it. Thankfully, he is also mostly out of pain.
As for the rest of us, well, what can I say? Our trains are ultimately hitched to Daddio's. Over the last few days the kids have been spending a lot of time with their Aunt Terry and cousin Josh. Thankfully and in further evidence that God is a genius, we have them nearby to love on the kids and provide distraction, comfort and a sense of routine. For Bennett and Olivia, their stress has been showing up with bad dreams and emotional outbursts or for instance, last night Bennett having a "bad headache".
I think it was at breakfast yesterday when I told Bennett I needed to call the doctor about something and out of nowhere he shouted "I hate cancer!" I just looked at him and said "I do too honey, we all do." There was nothing else to say to that. He nailed it.
It started out simply enough in the mid afternoon two days ago. A mild headache, nothing a few Tylenol couldn't take care of. That is until a few Tylenol couldn't take care of it and Phil had to move on to the big guns. By that evening we were making a call to the doctor because 10 mg of oxycodone weren't doing jack-squat and he was in excruciating pain whenever he moved his left eye. Fortunately for us, and one of God's small mercies, Dr. Kossman was on call.
Before I continue, I have to say this. It really can't be understated how awesome it is to reach your own doctor when you call the on-call service in a crisis. There is no explaining to do, no background to give, no time wasted. You just hit the ground running. And who's voice do you most want to hear when you're in crisis but the one who's been holding your hand and shepherding you through? So, when we reached Dr. Kossman I already felt better for Phil and whatever the hell was going on with him. The Captain was at the helm.
Back to the drama that was unfolding in my bedroom (don't even go there). After much discussion we decided to try other options for pain relief rather than spend the night in the ER and would check in with Dr. Kossman first thing in the morning. Despite our best laid plans however, it was a long, pain-filled, sleepless night. In the morning, because Phil had developed double vision in his left eye and numbness across the left portion of his scalp during the night, we were sent to an ophthalmologist. By now Phil could barely open his left eye and it was bulging a bit.
After a very thorough eye exam, the working diagnosis was that he had an evolving cranial nerve palsy of the III and V cranial nerves. The III nerve controls the movements of the eye muscles and the 1st branch of the V nerve controls the sensation across his scalp. Some inflammatory process in the brain was to blame for this. But what? Tumor? Infection? He needed an MRI STAT. Sounds like a scene from ER -- but unfortunately it wasn't. To say he looked like shit is to be flattering and I know he didn't feel much better.
Dr. Kossman, being the consummate physician he is, wanted to order the MRI himself and who am I to stop him? The guy is freakin awesome. On a crazy busy clinic day, he walked across the street and spent 30 minutes looking over Phil's MRI from one month ago with two neuro-radiologists before seeing us to discuss our next move. He's just that kind of doctor. Oh, and he worked us into his already unforgiving schedule. When he took Phil's blood it showed the obvious -- profound anemia, next-to-no platelets, and only 200 WBCs. That alone would make anyone feel like crap but combine it with a bulging eyeball, headache, postchemotherapy, and no sleep...you get the picture. When given the option to go home after the MRI or go in the hospital for pain control and support, Phil cried "Uncle!" and he got a bed on 3 South faster than I've ever seen.
Things happened pretty fast from there on out. He had lots of labs drawn including blood cultures. He was given IV fluids and 2 units of RBCs and platelets. He had his MRI. A neurologist (Dr. Evans) consulted on his case. An infectious disease specialist (Dr. Mayer) consulted on his case. Dr. Kossman came and rounded on him at the end of his day ~ 8:30p.m. More blood was drawn. More platelets were hung. Vancomycin (an antibiotic), Acyclovir (an antiviral), and Amphotericin (an antifungal) were all hung. Pretty much the whole kitchen sink was going into the guy.
And here's why: According to the MRI the cranial nerve palsy is due to an inflammatory/infectious process going on in and around the L orbit and in the cavernous sinus deeper in the brain. Shit, his brain is infected. That's serious. No wonder there was so much damn foot traffic through his room this evening. Those were my thoughts on the drive home from the hospital last night, when I could start wrapping my mind around what was going on. It's amazing how long it takes things to sink in when you're in crisis mode.
Today as I write this we now know that his blood cultures are all growing bacteria, gram negative rods for you medical folks. It is not uncommon for neutrapenic (immunosuppressed) people to grow gram negative rods in their blood cultures. However, this suggests that Phil may have two separate processes going on. Dr. Mayer believes that to be the case. He thought out loud to me that his port could be the source of this blood infection and he will do everything he can to sterilize the blood with the antimicrobials to save the port. Otherwise he'll need a new port down the line.
As for the infection in the brain, he doubted that was related to the bacteria in the blood but he won't know until the cultures and studies come back in several more days. Phil did have a blood patch in late August with his first spinal tap which if done with infected blood could have been a source of contamination. However, Dr. Mayer believes the timing is too far out. So, we will watch and play the waiting game. Meanwhile, Phil is very tired, weak and out of it. Thankfully, he is also mostly out of pain.
As for the rest of us, well, what can I say? Our trains are ultimately hitched to Daddio's. Over the last few days the kids have been spending a lot of time with their Aunt Terry and cousin Josh. Thankfully and in further evidence that God is a genius, we have them nearby to love on the kids and provide distraction, comfort and a sense of routine. For Bennett and Olivia, their stress has been showing up with bad dreams and emotional outbursts or for instance, last night Bennett having a "bad headache".
I think it was at breakfast yesterday when I told Bennett I needed to call the doctor about something and out of nowhere he shouted "I hate cancer!" I just looked at him and said "I do too honey, we all do." There was nothing else to say to that. He nailed it.
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