A lot has happened over the past month. I know a lot of you follow the blog and appreciate staying up to date so I am going to update you with as much information as possible while still keeping it succinct and to-the-point. So here it goes....
In the CANCER world there are really no easy days, just days that are easier than others. Throughout this journey we have had our share of tough days but I would go so far as to say that this past month has been one of the hardest we've experienced yet.
It all started with Pete's lungs needing to be drained in Portland while were passing through on our little mini RV trip. That was a shocker but we didn't realize how quickly that incident would lead to a progression in his condition. At that point the ER doctor informed us that he may need to have it drained again sometime soon but that he couldn't be sure how quickly it would fill up.
About a week later we went back to the ER, this time in Red Bluff. At that point they didn't think there was enough fluid to drain it and that we should come back again in about a week or when we thought it might be half-full. Over the course of the next couple weeks Pete would constantly say, "If it hurts this bad now, I have no idea how it's supposed to feel when it's half-full." He was just in constant pain all the time. His pain meds were increased and he began attempting to sleep propped up by pillows, sometimes rotating between the bed, couch, and lay-z-boy. It was then that he decided to ask his oncologist to write him a prescription for a hospital bed because he needed a better way to attempt to get some comfortable sleep.
Shortly after that, my FIL came up to attend a few of Pete's most important doctor's appointments to date; the appointments with the surgeons. It seemed that all our decisions had been hinging on these consultations. However, we mostly knew what the result would be but still tried to feign positivity. Pete's step-mom, who is a nurse, had informed us that the lung situation would most likely mean the surgeons wouldn't feel comfortable operating on him. There are a host of things that could go wrong including collapsed lungs, not being able to remove the breathing tube, or his body being immuno-compromised and not being able to recover. It turns out she was right and as much as we didn't want to hear it, her honesty was really what we needed to prepare ourselves for those two appointments.
One of the surgeons that we have been meeting with regularly over the course of the past 10 months is Dr. Matthews. He's a young guy with lots of energy and compassion. Throughout the past 10 months he has been there to answer the hard questions and has showed so much desire to help Pete. However, when we left that consultation, it was difficult not to be angry with the final result of our meetings; surgery just wasn't an option. It made me wonder, "What would it have been like if he had just done the surgery when Pete was first diagnosed?" But in the midst of our silence, after leaving the Dr's office, I had to remind myself of the positive. I told Pete, "Dr. Matthews really cares about you and if he could just snap his fingers and make it all better he would, but he can't so he is willing to do anything he can to make this better for you." While in the consult he talked with us about chemo vs. "quality of life", hospice care, counseling, and our new treatment options. He committed to taking the next steps to get Pete connected with someone he can talk to and an interventional radiologist to help with the lung problems. These are both things we needed and are very thankful that he offered to spearhead those endeavors.
After that appointment we headed down to UCSF in San Francisco. The result was the same. The Dr. explained a little more about why she didn't think surgery was the right option. She then suggested we meet with a genetic counselor to discuss the history of cancer in Pete's family. It's a good thing Charlie was there because we were totally clueless about ages of family members at diagnosis, etc..
The next morning Charlie urged Pete to be seen at the ER. It's a good thing he did because Pete's lung was half-full of fluid and his lung was on the verge of collapsing. It was hard to believe that it had filled up nearly 3 liters of fluid in less than 3 weeks! I was calling the ER to check on Pete periodically while I waited at home while Lucas napped. Charlie had told me how difficult the fluid removal was for him but said he was doing better now and that he would have another chest x-ray and be cleared to go home. Just a few minutes later he called and said, "Pete's having trouble breathing and he'd like you to come down. Just leave the kids in the car and I'll take them home. They don't need to see this." That was the quickest I have ever gotten out of the house with 2 kids. Amidst tears I pulled up to the ER and saw Charlie waiting outside. He apologized for scaring me and said Pete was just in a lot of pain but would be alright.
The minute I walked in the ER and laid eyes on Pete I knew he was in severe pain. He was coughing uncontrollably, tears were streaming down his face, and he was struggling to keep his temperature under control despite being wrapped up in 3 hospital blankets. I was enraged and immediately ran over to the nurses station to figure out what was going on. Within 5 minutes they gave him a shot of pain meds and the respiratory therapist was able to get him to take a few deep breaths to help him expand his lung. That was a scary couple of minutes, but I was so glad to see that he was okay although I hate to see him in such intense pain like that.
The doctor explained that it was such a traumatic experience because of the amount of fluid that was drained from the lung at one time. That's why our next course of action will be to meet with an interventional radiologist who will help us decide on a procedure which will help him remove or relieve the pressure of the fluid on his own.
So, it wasn't so short, but there's an explanation of the recent chain of events.
In the CANCER world there are really no easy days, just days that are easier than others. Throughout this journey we have had our share of tough days but I would go so far as to say that this past month has been one of the hardest we've experienced yet.
It all started with Pete's lungs needing to be drained in Portland while were passing through on our little mini RV trip. That was a shocker but we didn't realize how quickly that incident would lead to a progression in his condition. At that point the ER doctor informed us that he may need to have it drained again sometime soon but that he couldn't be sure how quickly it would fill up.
About a week later we went back to the ER, this time in Red Bluff. At that point they didn't think there was enough fluid to drain it and that we should come back again in about a week or when we thought it might be half-full. Over the course of the next couple weeks Pete would constantly say, "If it hurts this bad now, I have no idea how it's supposed to feel when it's half-full." He was just in constant pain all the time. His pain meds were increased and he began attempting to sleep propped up by pillows, sometimes rotating between the bed, couch, and lay-z-boy. It was then that he decided to ask his oncologist to write him a prescription for a hospital bed because he needed a better way to attempt to get some comfortable sleep.
Shortly after that, my FIL came up to attend a few of Pete's most important doctor's appointments to date; the appointments with the surgeons. It seemed that all our decisions had been hinging on these consultations. However, we mostly knew what the result would be but still tried to feign positivity. Pete's step-mom, who is a nurse, had informed us that the lung situation would most likely mean the surgeons wouldn't feel comfortable operating on him. There are a host of things that could go wrong including collapsed lungs, not being able to remove the breathing tube, or his body being immuno-compromised and not being able to recover. It turns out she was right and as much as we didn't want to hear it, her honesty was really what we needed to prepare ourselves for those two appointments.
One of the surgeons that we have been meeting with regularly over the course of the past 10 months is Dr. Matthews. He's a young guy with lots of energy and compassion. Throughout the past 10 months he has been there to answer the hard questions and has showed so much desire to help Pete. However, when we left that consultation, it was difficult not to be angry with the final result of our meetings; surgery just wasn't an option. It made me wonder, "What would it have been like if he had just done the surgery when Pete was first diagnosed?" But in the midst of our silence, after leaving the Dr's office, I had to remind myself of the positive. I told Pete, "Dr. Matthews really cares about you and if he could just snap his fingers and make it all better he would, but he can't so he is willing to do anything he can to make this better for you." While in the consult he talked with us about chemo vs. "quality of life", hospice care, counseling, and our new treatment options. He committed to taking the next steps to get Pete connected with someone he can talk to and an interventional radiologist to help with the lung problems. These are both things we needed and are very thankful that he offered to spearhead those endeavors.
After that appointment we headed down to UCSF in San Francisco. The result was the same. The Dr. explained a little more about why she didn't think surgery was the right option. She then suggested we meet with a genetic counselor to discuss the history of cancer in Pete's family. It's a good thing Charlie was there because we were totally clueless about ages of family members at diagnosis, etc..
The next morning Charlie urged Pete to be seen at the ER. It's a good thing he did because Pete's lung was half-full of fluid and his lung was on the verge of collapsing. It was hard to believe that it had filled up nearly 3 liters of fluid in less than 3 weeks! I was calling the ER to check on Pete periodically while I waited at home while Lucas napped. Charlie had told me how difficult the fluid removal was for him but said he was doing better now and that he would have another chest x-ray and be cleared to go home. Just a few minutes later he called and said, "Pete's having trouble breathing and he'd like you to come down. Just leave the kids in the car and I'll take them home. They don't need to see this." That was the quickest I have ever gotten out of the house with 2 kids. Amidst tears I pulled up to the ER and saw Charlie waiting outside. He apologized for scaring me and said Pete was just in a lot of pain but would be alright.
The minute I walked in the ER and laid eyes on Pete I knew he was in severe pain. He was coughing uncontrollably, tears were streaming down his face, and he was struggling to keep his temperature under control despite being wrapped up in 3 hospital blankets. I was enraged and immediately ran over to the nurses station to figure out what was going on. Within 5 minutes they gave him a shot of pain meds and the respiratory therapist was able to get him to take a few deep breaths to help him expand his lung. That was a scary couple of minutes, but I was so glad to see that he was okay although I hate to see him in such intense pain like that.
The doctor explained that it was such a traumatic experience because of the amount of fluid that was drained from the lung at one time. That's why our next course of action will be to meet with an interventional radiologist who will help us decide on a procedure which will help him remove or relieve the pressure of the fluid on his own.
So, it wasn't so short, but there's an explanation of the recent chain of events.
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