Aftershock of Pneumonia
I don't know if this will be long or short and I will just be dropping the bits of my brain directly into the blog. (Sorry about the short post from before, my mistake)
I was not feeling well a few weeks ago. In actuality, my breathing had really sucked since I had H1N1 over the summer. While the swines didn't kill me, they certainly curtailed any dreams of being a cross-country skiier or long-distance runner. To be honest, I don't think I've ever harbored those dreams. In a smaller yet more profound sense it did strike me that my livelihood and the thing I am best at, which is the unfortunate choice of being some sort of spoken word performer/storyteller. You know, one of those actors despite not having acted in anything since last December. My voice is a great asset, as is my breath control, and I know it and I know I have underutilized it which I believe has been a great detriment to my career. I have been able to use it for the delight of my children when I tell them stories, which is a treasure for all of us. I love doing it and they love hearing daddy's stories.
When my breath is taken away, whether by Hodgkin's pleural effusion when first diagnosed in 2002 (yet despite the breathlessness I was still able to give a fairly memorable performance as Banquo and choreograph the fights), to the recurrences where the disease centered on nodes in the lung. Vast amounts of chemotherapy and radiation therapy have weakened my lungs again and again. Of course, the years of smoking Camels and Marlboros did nothing to help my lung function, and that is a curse I gave myself. It should be noted however, that the smoking did not give or contribute to Hodgkin's, according to oncologists - there is no link - but damn did it affect recovery. I was born early with fluid in my lungs and had a lengthy hospital stay in Philadelphia for the first weeks of life and came down with case of pneumonia when I was two, requiring another lengthy stay in Philly again. So, from the beginning, my lungs were not the best specimens of human health. Living my life in polluted areas does not do good things for breathing, either.
Anyway, flashing forward to November 10th or so and I start to have a rattle in my lungs that is fairly nasty. I am immuno-compromised thanks to cancer and transplants - so I tend to pick up infections with clumsy ease. It felt like the beginnings of a chest cold or allergies or bronchitis. Another week and I feel worse and have a cow of fatigue sitting on my body. I stayed on a chair for a whole day, feeling like I just needed to get a little more sleep. The next two days I did feel a little better so I went to NYC for my third treatment of Bendamustine. Talked to the doctor about the chest crap, they tested for swine flu (in case I contracted it again thanks to my defective immune system), and gave me some Zithromax. Second day of NYC/bendamustine went as predicted and my fatigue, as predicted, did not go away. However, I walked several blocks to finally try to catch a cab. I should have had the lobby call one for me in hindsight. The cold wet air made me feel like death warmed over. I was cold, clammy, and couldn't stop coughing.
November 20th, a friday, was a doozy. I slept all day and had trouble getting up and around. So much that I ignored the dog so much that the poor girl pooped on the floor by the door waiting to be let out. Johnathan had a party to go to and Steph was going out for the evening to see a movie with friends. I promised to clean up as much as I could, which ended up being nothing. I was a useless gelatinous blob of mucous and pain. Steph suggested I call the doctor and I didn't, of course. I knew it would mean I would have to go in the hospital and I thought it would be foolish to go for something like bronchitis. Plus, I felt like doing NOTHING. Friends were coming over to help relieve some twin duties so both Steph and Johnathan could get out of the house for a few hours. Steph, especially, who was having an especially hard week, needed to get out to the movies and have a dfrink afterward.
Of course, life throws curves. . . all the time. 10 PM I got a call from the parent of Johnathan's friend, where he was staying for the evening. They were playing a game with toothpicks and she didn't get them all up from the carpet, so my boy of course stepped on one, driving it over half of an inch into his foot. Mike and Matt went to get him and they took him to the ER, where Steph showed up. After waiting four hours the docs finally pulled it and bandaged it.
Saturday and Sunday I declined more. By 2:30 Monday morning I could barely move. I went downstairs to the bathroom and it took me fifteen minutes (at least) to climb the stairs. I could NOT catch a breath. I woke Steph and told her to call 911. They got there, evaluated me and transported me to SJHS in Vineland. Put on oxygen and some morphione for the pain in my chest. I was diagnosed with pneumococcal pneumonia. I had pleural effusion as well as cardiac effusion. The main concern was that they felt the fluid around the heart was the main problem, but it turns out it was only because of thickening of the heart wall from all treatments and the bacterial infections. After a few days I was moved from ICU to the step down unit and I worsened. My breathing became ragged, I developed a fever, and my numbers plummeted. I needed more and more oxygen and still had unbearable fatigue. I was moved back to ICU and I decided I wanted to be transported to HUMC as soon as something was available.
Another bug was found in my system, another pneumonia, and my chest xray did not seem to improve too much. The secondary pneumonia is common with patients receiving Bendamustine. Anyway, the pulmonologist strongly urged I be put on a ventilator. I refused. I did improve enough to be moved to step-down, and after a few days in step-down I was transported to HUMC.
I was at HUMC for a few days and improved dramatically and was finally sent home on Monday. However, I am still recovering. I can't walk up stairs, I can only stand for a limited time, and my muscles have atrophied from being bedridden for two weeks (more). I am on steroids and four different prophylaxis antibiotics while my immune system tries to recover. The newest development is the blood sugar testing, thanks to the steroid induced diabetes. So far my sugar at hgome has been controlled enough and I haven't needed any insulin, but that could change.
I do know I am glad to be home, happy for the friends I have, and ecstatic to see my family again. I may have lost work, but I am alive and I can appreciate every breath I take. Thank you for being there for me, and I can only hope my bond with you grows stronger!
Probably a little too scatter-shot, but daytime TV and meds will do that.
I was not feeling well a few weeks ago. In actuality, my breathing had really sucked since I had H1N1 over the summer. While the swines didn't kill me, they certainly curtailed any dreams of being a cross-country skiier or long-distance runner. To be honest, I don't think I've ever harbored those dreams. In a smaller yet more profound sense it did strike me that my livelihood and the thing I am best at, which is the unfortunate choice of being some sort of spoken word performer/storyteller. You know, one of those actors despite not having acted in anything since last December. My voice is a great asset, as is my breath control, and I know it and I know I have underutilized it which I believe has been a great detriment to my career. I have been able to use it for the delight of my children when I tell them stories, which is a treasure for all of us. I love doing it and they love hearing daddy's stories.
When my breath is taken away, whether by Hodgkin's pleural effusion when first diagnosed in 2002 (yet despite the breathlessness I was still able to give a fairly memorable performance as Banquo and choreograph the fights), to the recurrences where the disease centered on nodes in the lung. Vast amounts of chemotherapy and radiation therapy have weakened my lungs again and again. Of course, the years of smoking Camels and Marlboros did nothing to help my lung function, and that is a curse I gave myself. It should be noted however, that the smoking did not give or contribute to Hodgkin's, according to oncologists - there is no link - but damn did it affect recovery. I was born early with fluid in my lungs and had a lengthy hospital stay in Philadelphia for the first weeks of life and came down with case of pneumonia when I was two, requiring another lengthy stay in Philly again. So, from the beginning, my lungs were not the best specimens of human health. Living my life in polluted areas does not do good things for breathing, either.
Anyway, flashing forward to November 10th or so and I start to have a rattle in my lungs that is fairly nasty. I am immuno-compromised thanks to cancer and transplants - so I tend to pick up infections with clumsy ease. It felt like the beginnings of a chest cold or allergies or bronchitis. Another week and I feel worse and have a cow of fatigue sitting on my body. I stayed on a chair for a whole day, feeling like I just needed to get a little more sleep. The next two days I did feel a little better so I went to NYC for my third treatment of Bendamustine. Talked to the doctor about the chest crap, they tested for swine flu (in case I contracted it again thanks to my defective immune system), and gave me some Zithromax. Second day of NYC/bendamustine went as predicted and my fatigue, as predicted, did not go away. However, I walked several blocks to finally try to catch a cab. I should have had the lobby call one for me in hindsight. The cold wet air made me feel like death warmed over. I was cold, clammy, and couldn't stop coughing.
November 20th, a friday, was a doozy. I slept all day and had trouble getting up and around. So much that I ignored the dog so much that the poor girl pooped on the floor by the door waiting to be let out. Johnathan had a party to go to and Steph was going out for the evening to see a movie with friends. I promised to clean up as much as I could, which ended up being nothing. I was a useless gelatinous blob of mucous and pain. Steph suggested I call the doctor and I didn't, of course. I knew it would mean I would have to go in the hospital and I thought it would be foolish to go for something like bronchitis. Plus, I felt like doing NOTHING. Friends were coming over to help relieve some twin duties so both Steph and Johnathan could get out of the house for a few hours. Steph, especially, who was having an especially hard week, needed to get out to the movies and have a dfrink afterward.
Of course, life throws curves. . . all the time. 10 PM I got a call from the parent of Johnathan's friend, where he was staying for the evening. They were playing a game with toothpicks and she didn't get them all up from the carpet, so my boy of course stepped on one, driving it over half of an inch into his foot. Mike and Matt went to get him and they took him to the ER, where Steph showed up. After waiting four hours the docs finally pulled it and bandaged it.
Saturday and Sunday I declined more. By 2:30 Monday morning I could barely move. I went downstairs to the bathroom and it took me fifteen minutes (at least) to climb the stairs. I could NOT catch a breath. I woke Steph and told her to call 911. They got there, evaluated me and transported me to SJHS in Vineland. Put on oxygen and some morphione for the pain in my chest. I was diagnosed with pneumococcal pneumonia. I had pleural effusion as well as cardiac effusion. The main concern was that they felt the fluid around the heart was the main problem, but it turns out it was only because of thickening of the heart wall from all treatments and the bacterial infections. After a few days I was moved from ICU to the step down unit and I worsened. My breathing became ragged, I developed a fever, and my numbers plummeted. I needed more and more oxygen and still had unbearable fatigue. I was moved back to ICU and I decided I wanted to be transported to HUMC as soon as something was available.
Another bug was found in my system, another pneumonia, and my chest xray did not seem to improve too much. The secondary pneumonia is common with patients receiving Bendamustine. Anyway, the pulmonologist strongly urged I be put on a ventilator. I refused. I did improve enough to be moved to step-down, and after a few days in step-down I was transported to HUMC.
I was at HUMC for a few days and improved dramatically and was finally sent home on Monday. However, I am still recovering. I can't walk up stairs, I can only stand for a limited time, and my muscles have atrophied from being bedridden for two weeks (more). I am on steroids and four different prophylaxis antibiotics while my immune system tries to recover. The newest development is the blood sugar testing, thanks to the steroid induced diabetes. So far my sugar at hgome has been controlled enough and I haven't needed any insulin, but that could change.
I do know I am glad to be home, happy for the friends I have, and ecstatic to see my family again. I may have lost work, but I am alive and I can appreciate every breath I take. Thank you for being there for me, and I can only hope my bond with you grows stronger!
Probably a little too scatter-shot, but daytime TV and meds will do that.