Allison Posted August 21, 2003 Posted August 21, 2003 Hi All, Instead of heading to Sloan Kettering with my this past Tuesday to see a specialst about my father's BAC, I spent the day fighting with the MICU floor staff to have my father's pleural effusion tapped. Let me back up to the beginning though... I arrived at my parents house on Sunday evening thinking I would just be providing moral support after the negative CT scan results they received on Friday and preparing for our trip to Sloan Kettering in New York. Instead I found my father with EXTREME shortness of breath (we're talking fish out of water - gasping for air). Always the stoic character he was claiming to be fine, and was hesitant for my mother to contact his oncologist lest it jeopardize our planned trip to Sloan. It took me about 5 minutes - and I am kicking myself now that it took that long - to override their "decison" and dial 911. On Sunday evening the ER doc looked at a current chest xray compared to one from the spring and one from the early summer. Noting that his BAC tumors were *huge* in the upper and middle lobes of his right lung (I think I posted the wrong lung in my intro the the Intro Forum - it is his right not left lung) in his earlier xrays, he looked to the Sunday xray and said "Ah - pleural effusion, they are going to have to tap that." My mother and I got him settled into his bed about 3am Monday morning, and came home to crash. By Monday morning, they had yet to tap the pleural effusion, but did send him for new CT scans. Midday, I called his oncologist to find out the exact results of the CT scan he had a week and a half ago, so I would know how to compare them to the new scans. What he told me was there was additional consolodation in the upper and mid lobes, but his left lung, and right lower lobe were still looking fine. On Monday evening, they *still* hadn't tapped him. Tuesday morning dawned on my *still* untapped father, our oncologist visited him in the hospital and told him the results on the Monday scan showed his entire right lung and entirely cancerous. His current breathing problems were caused by "all mass and inflammed lymph nodes" and while of course there wasn't "no hope" it didn't look so good. We were completely shocked. BAC is a carcinoid - slow moving... how did it take over his entire lung in 10 days? By Tuesday afternoon surgeon STILL hadn't been by to tap him. My poor father, suffered, *gasping* for almost 2 whole days on full face mask 100% oxygen before a (wonderful and competent) surgical resident came by to finally perform a pleurodenisis (sp? - basically a large needle to suck out what liquid they could find). A floor resident pulled me and my Mom aside to tell us that my father was in the "end stages" of his lung cancer, and they weren't expecting to find much liquid in the pleura, since from the scans it was clearly "all mass". 3 LITERS LATER... My Dad is finally breathing much better, and while his O2 saturation is still in the low 90's even with a nasal canula with 100% oxygen, he is now coughing up pneumonia like sputum with albuterol treatments. The bad news, even though "our" regular surgeon was supposed to come by to discuss further surgical options with us - like a chest tube or a valve/spigot type thing they can install to drain the pleural cavity in the future.. he didn't grace us with his presence today either. Our local oncologist wants to start him on some sort of chemotherapy, but doesn't want to do anything that would exclude him from a possible clinical trial at Sloan Kettering. The care he is currently receiving at our local hospital has clear palliative overtones to it, and this just doesn't seem right for a man who was at work without oxygen last Wednesday. I am now actively pursuing tranferring him to Sloan Kettering (even if it means a 2+ hour ambulance ride for him and somewhat uncertain housing for me and my Mom in NYC). I figure at this point we have nothing to lose... and Dad has always said, he may get the cancer or the cancer may get him, but either way it's going to be a h*ll of a war. I am just so angry yet demoralized. How could things get so bad so quickly? Are things even as bad as we've been told they are? Are we doing the right thing by sending him to New York? I guess only time will tell, and nothing will change is our hopeful fight, because we hate this d*mn disease. (with sincere apologies for the colorful language, but I am so angry right now) Quote
norme Posted August 21, 2003 Posted August 21, 2003 Allison, So sorry your father is having to go through such a terrible time when only last week he was working. I hope you can get him to Sloan and hope they can help him get back on his feet. So glad you arrived home in time to take over. There are just times when one has to override all decisions and get help. Sometimes sick men just don't think they need help, - - that somehow within a matter of minutes things will change for the better so they try and wait. Just like when they are out in a car and lost and won't stop for directions. I know mine is like that...It must be a man thing...... HOpe and pray all goes well very soon...... Quote
Allison Posted August 22, 2003 Author Posted August 22, 2003 Unfortunately my best efforts to get him down to Sloan don't look like they are going to pay off. Our local onc and our Sloan onc consulted this week and decided that it wasn't worth it for him to go. They told us that he would probably need a respirator soon, after that he immediatly set up a DNR. This whole week has been so incredibly hard and I am tired of seeing him suffer. Allison Quote
teresag Posted August 22, 2003 Posted August 22, 2003 I'm sorry about your father. I absolutely love he may get the cancer or the cancer may get him, but either way it's going to be a h*ll of a war. Wonderful quote! Before he goes on a ventilator (aka respirator), consider whether he will ever get off the dang machine. He may wish to make himself "DNI" (do not intubate) in addition to DNR, which refers to resuscitation in general. A DNR order alone may not keep him off the ventilator, if that's what he wants. Different hospitals have different policies relating to this; you might wish to inquire. Wishing you all peace and comfort, Teresa Quote
Hope J. Posted August 22, 2003 Posted August 22, 2003 Unfortunately my best efforts to get him down to Sloan don't look like they are going to pay off. Our local onc and our Sloan onc consulted this week and decided that it wasn't worth it for him to go. They told us that he would probably need a respirator soon, after that he immediatly set up a DNR.This whole week has been so incredibly hard and I am tired of seeing him suffer. Allison I'm so sorry to hear that he won't be able to get to Sloan....I agree you should discuss with him, your mom and the doctors/nurses about putting him on a ventilator. These are such difficult times for all of you and I really feel your pain and love for your father in your posts. I think you've done very well being a great advocate for your father and you'll continue to help him in these final days. I will keep all of you in my prayers for strength and peace when the time comes. Take Care...... Quote
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